No sex but a lot of hard running, I am training for an up coming 10K,Ran a 45 min 10k the day before and i had my bloods taken at 8 15 AM the following morning.
Honestly, I don’t know if running affects PSA. I’ve never heard that.
Had my usual yearly check up in July,bloods taken and PSA reading of 1.5,my cholestrol was up slightly to 6.1 everything else all fine,my blood pressure is elevated and i have been on Zanidip for over a year,met with my GP to discuss results of bloods,he changed my blood pressure to from Zanidip to perindopril tosilate/amlodipine teva 5mg/mg and recommended a cholestrol low diet and to see him again in 4 weeks to see if cholestrol had come down.Four weeks later had bloods done again and the lab instead of checking my cholestrol they checked psa again and result of this PSA read 4.2.My doctor was perplexed by this reading and has recommended waiting 4 weeks and take another test.I am 61 year old male in good health a marathon runner and fighting fit with no sympthoms of any kind regarding prostate problems.Is this a rogue reading (4.2) and should i be worried.My BP is now 140/80.Could the change of BP medication have anything to do with this PSA result or did the lab screw up.
Is it possible you had sex or went on a bike ride in the days before the second PSA test?
Husband is 65. PSA 4.6 on 2 occasions. Gleason 3+3. His father had Prostate cancer -diagnosed in his early 80’s but died of a stroke at 84. Biopsy showed 3 out of 10 samples had cancer. Seeing consultant in October to discuss treatment. Any advice?
Would like to know percentage of each sample that was cancerous. Offhand, I’d say WW is a valid option.
10% of the whole 10 samples was cancerous.
That’s not much.
That’s what we thought…no MRI offered. Suggestion is – surgery might be the option!! Seems a bit drastic.
Hello all! Newbie here! Here is our story. My husband is 47 and was diagnosed with prostate cancer. No symptoms. PSA level of 6.3. Biopsy done, returned with all 12 samples cancerous. Had a MRI of the pelvis to see if it had spread. Results are tomorrow so of course I’m researching and freaking out. Healthy male. Thanks in advance for any comments.
12 of 12 is not good. Not sure WW is for you.
Tks for site/input Michael,
50 yo fiirst PSA 3.8 (family doc)
3 months later PSA 3.4 negative DRE
3 months later PSA 4 negative DRE
off to Uro with PSA 4.5 DRE negative
12 needle TRUS 4 weeks later 1 core Gleason 6 @5% on Active Surveillance.
6 months PSA 3.2
6 month PSA before confirmation biopsy and 1 day before PSA test PSA 3.6 (day after sex..oops forgot a nono).
1 year confirmation biopsy
1 core opposite side Gleason 6 @ 30%
Previous Gleason 6 foci on right side not found.
Prostate size 22gr.
Still gladly on Active Surveillance with biopsy in 2 years, 6 months PSA and annual DRE.
If and when treatment required Brachial boy, SBRT or EBRT.
Father had Gleason 7 with successful surgery at 70…but what a long brutal recovery.
Any suggestions and or input appreciated. Note; AS is becoming hugely popular in Canada. Partly due Dr Klotz and large study @ Sunnybrook.
Ben (ontario, Canada)
Seems like you are good to keep on active surveillance.
Its been a week since I was told I was a Gleason 6 and already I’ve had red meat, mac & cheese and fried catfish (but only once). I already feel defeated. But along with that I have been drinking tomato juice w/turmeric & black pepper twice a day and 3 cups of green tea a day. I exercise regularly and have been for the last two years. I wish I knew if that along with more fruits and vegetables is that going to be enough to inhibit any new growth. I haven’t tackled supplements yet. Too many out there. Should I be doing more? Perhaps I need to call Life Extension and talk to a wellness specialist. I’ve seen them mentioned in the forum. Thanks.
A gleason 6 is not much. Need to know how many cores positive, what percentage of each positive core is cancerous. Id eat or drink as much pomegranite as i can get, cut red meat to once a week, reduce dairy as much as is comfortable for you, and eat lots of fruits and vegetables. Don’t worry.
First off, thanks Michael for this very informative website. My family doctor has my PSA level checked once a year as part of my physical. My PSA level in 2014 was 2.5, then in December of 2015 it had jumped to 3.8. Six months later (June 2016) it was 4.5. He was concerned so he sent me to the URO. The URO did a 12 sample biopsy. I just got the results 2 days ago and I had two samples that were positive. I believe he said one was 2 MM and the other was < 0.5 MM which emphasis on the smaller one as being a good thing. I'm not sure how significant that is because I guess i don't understand the significance of the sample size. The Gleason score he gave me was 3+3=6. He said there is nothing to treat at this point which is good news. He wants to do another biopsy in 3 months. My real question is how can I get started with the lifestyle changes (diet, supplements, etc) to hopefully maintain the level I'm at now. Things you need to start doing like cutting out the eggs and chicken with skin seems straight forward but other things do not. Sorry for such a broad question. I know it will be a process and I can't figure it all out at once. Thanks.
Nothing to worry about. Don’t know what the mm size means, usually it is given as percent of the sample that is cancer. Read study that is in the news today. It is in NY Times and pretty much everywhere else. As for diet, cutting red meat is the big one.
Hi, 64 years old, PSA 4.5 in 2011, 4.59 in 2012, 7.01 in 2014, 7.08 in July, 2015, Biopsy Oct. of 2015 12 cores taken 2 positive – 1 involving 5% Gleason 3+3 left apex medial, the other 20% Gleason 3+4 left apex lateral, and one high pin, left base medial. T1c is the stage. The doctors all wanted to do surgery. Did a lot of reading, bought the book Invasion of the Prostrate Snatchers, decided to do AS. I also did the Prolaris testing it came back at 2.7, less aggressive.Had another PSA in March 2016 6.90. Just had a PSA last Friday it’s up to 9.4. I go in 2 weeks for a MRI. I’m at the point now that I will probably choose radiation or something. Just would like to know your thoughts on all of this. I’m worried that it may have spread. Thank you!
Did the doc feel anything on digital exam?
Also, what is size of the gland?
Did you have sex or ride a bike in the days before your last couple of PSAs?
No rush for treatment at this moment.
Ok, I actually talked to the nurse about my MRI from 12/15, she said it was a 6mm low signal lesion in the right peripheral zone apex. TI-RADS 3 – indeterminate.
The gland was 27.4 cc in volume.
I really don’t understand what any of this means. Especially that the MRI says the lesion in the right, when in the biopsy everything was on left. Maybe you can provide some insight.
The gland is small; that is not good. Means much of the PSA is due to cancer not gland enlargement. Im not sure about the other stuff. The fact that the doc felt something on digital exam and the gleason was 7 are of concern, though 3+4 better than 4+3. If you decide on treatment, you might consider CyberKnife.
Husband blood tests show pas of just over 20. Rectal examination by consultant show no abnormality. Mri scan clear. Going for biopsy tomorrow. Any advice pls. His father died from PC at 78
Wait for biopsy results. Also, what is the size of the prostate?
Dr not actually specified apart from ‘quite large’ nb, husband is 62
Find out exact size. There is a formula for determining how much of the 20 is caused by size vs cancer. But you dont even know yet if there is cancer. Relax.
Thank you. It helps as we will have some idea of the questions to ask.
Let me know biopsy results and gland size.
How does vitamin C IV work for lowering psa and fighting 6 on the Gleason scale ?
Im sorry but I don’t know the answer to your question.
I stumbled across this site while researching prostate cancer. My dad was diagnosed last month, Gleason 7 (3+4), psa level a little less than 7. I’ll be honest, I’m scared, so that’s why I’m researching. It sounds like he may be passed the WW stage, correct? Thanks for any advice you can provide.
Not necessarily. How old is he? What is the size of his prostate?
I’m 63 and had a PSA 20 minutes after DRE and had sex within 48 hours before….DRE was normal but PSA came back 4.67 from a different lab than all my other PSA test ..prior high was 3.0 two years before and 2.7 two years before that. I went to ur and he did DRE and found nothing but do have slightly enlarged prostrate.. He said I could redo the PSA and wait and watch or get a biopsy. My GP gave me same options.
That PSA is invalid. Take it again, and try to use the same lab all the time.
My total PSA progression is as follows:
67 4.4 2/15/16
67 2.8 free 0.76 6/27/16
Most of the draws were after a DRE as part of my annual physical, including the 4.4 reading. After that reading, my family physician referred me to my urologist. He said that the draw should be no less than 3 days after a DRE or ejaculation. The last reading was 9 days after ejaculation. Both doctors performed a DRE and while the prostate is enlarged, it was smooth with no abnormalities. As a result of the latest reading, the urologist says that we will simply watch it with each annual exam, but make sure the draw is timed correctly. Should I feel pretty comfortable about this?
I would say you have little to worry about. And those PSAs are skewed because you had a DRE before gand.
Interesting article in NY Times about PC.
I had that follow-up MRI last week that I spoke about in an earlier post. The PI-Rad number was not good- a 14. So now I’m
getting a targeted MRI next month. However I have to wait 5 weeks for it. I was hoping to get it sooner. Your thoughts would be
I apologize but I Don’t know qhat a PI Rad number is.
Thank you for the website, some good content here.
I’m 53 with a PSA of 4.1, free PSA 17 and Gleason score 3+3 (3 cores positive) father passed of prostate cancer at age 60 (terrible diet and chain smoker). Doctor says radical prostectomy is best option. Thoughts?
If I were you I think I might go for watchful waiting. A Gleason 6 isn’t bad. However, the fact that your father died of PC at age 60 is something to be mindful of. I started WW at age 53 and am still doing it. However, my father, though he did have PC, did not die of it. He died at 88 of an unrelated matter.
Michael, thank you so much for the quick reply. I have a consultation appointment with my urologist at the end of March and will make a decision afterwards. For now sites like yours have been very helpful in gathering info.
Thanks Michael for this great website. Great information here. I was diagnosed with prostate cancer. Gleason 3+3 Psa -5.8.
For a couple of years psa bounced around in the 4’s then 5.0 then 6 months later 5.8. Biopsy two cores cancerous out 12.
Total & free psa came in at 14. Under 10 not good-over 25 no cancer. So this test got it right-right on the money. Who says
psa’s are not accurate? From previous posts it sounds like I have my answer but I wanted to share. MRI in May.
Sounds like WW is for you.
Hi Michael! First of all thank you very much for your web site. Now, to the problem. My husband was diagnosed with prostate cancer yesterday. We were in shock. But today after he went to work I got on the Internet and started to dig 🙂 He is 59 yo. PSA is 5.5. Gleason is 6 (3+3). tumor measures 0.5 mm, one core involved. 12 samples were taken, one is positive. No perineural invasion found. Your opinion? Thank you very much for any info.
Not much to worry about. A lot of people don’t even consider a 3+3 to be cancer. Just follow it along. No treatment needed for a long time, maybe never.
I’m 59 yrs old. psa twice over 7, first time in september this year, 2nd time at the end of november 2015. In biopsy in october 3 scores out of 12 positive. Diagnosed as Gleason 6, magnet “clean”. No symptoms. Doctor ordered watch and wait with the next psa in three months and new magnet in 6 months. What do you think? Thank you for the site. Br JT
HI JT, what do you mean by magnet?? Does anyone know if a gleason 6 can become worse even if psa stays the same? Or will a psa always go up if worsens?
54 year old with some reduction in sexual area and urinary stream not as strong, but nothing serious. PSA 4 w/biopsy 7 of 12 with prostatic ranging from 8 percent to 40 percent and gleason 6. URO rec Prostatectomy. I didn’t agree and decided to go with the watchful waiting, but did get another appointment for a second opinion. I just can’t see losing the prostate and experiencing all the possible negative side effects when things are working relatively well. I have done a lot of reading on the topic and think WW is the best option. Is Genetic testing of biopsy something that a person should look into? Any thoughts? Thanks, Gary
Gleason 6 suggests watchful waiting would be ok; however, 7 or 12 cores positive is a concern. I would get a second opinion not from a urologist but from a medical oncologist who specializes in genitourinary cancers. Yes, a genetic test might be helpful. There is one called Prolaris that I am thinking of having soon.
Forgive me for not responding to posts for several months; I was not being notified of them.
Is this Blog still active? 63 in good health. Increase in PSA 6 years ag0. Rise under 4 but referred to a Uro and immediate biopsy. 15 cores, 13 normal 2 with High grade PIN. Urg wanted another biopsy. PSA dropped to 2.9 so I deferred the biopsy. 4 years of 6 month PSA and rectal exam. PSA remain around 4 (BPH -63gams-and BPH symptoms which are progressing negatively). PSA in April up to 7.5 followed by a second biopsy (MRI guided) 20 cores with 2, 3+3 Gleason, cancer grade t1c, Active Surveillance?
Yes still active but was having a problem getting comments. Yes you are good for active surveillance in my opinion.
Is this web site still active? Nothing since Dec 2014.
Will it be updated with new info?
Has anyone tried the advertised “Super Beta Prostate”? (free bottle)
All of these products are about the same; limited effectiveness. But I still take one.
How to get an help from (medical center Isreal) to get rid of this prostate gland enlargement . I am an old man , please i need HELP
You can take a drug like Avodart or have a procedure wuch as TUNA or TURP.
After several PSA tests in the mid 4s, I flew 3000 miles from home to get a MRI guided biopsy and when i returned home saw a new urologist who ordered a new PSA test; completed 9 days post procedure. It came in at 13.5. My biopsy showed 1 out of 12 cores under 5% malignancy, gleason 6. The urologist who did the biopsy said that he recommended active surveillance. I am wondering why the urologists ordered the PSA so soon after the biopsy as I read that this is unreliable.
No idea why doc ordered repeat psa so quick; hope you are on active surveillance and sorry took so long to respond. Had a problem with site.
Just got gleason 6 with 8 samples only one had 5% adenocarcinoma with 6.3 psa. Non palpable and immediately told to get surgery. This was even tho doc said another biopsy could come back negative (just how that would resolve anything I don’t know).
My question is what are the major changes that occur to make G6’s later elect to have surgery. In other words if I watch and wait what am I looking for. My apology because I know this has been answered before.
You are looking for rising PSA, more cores positive on future biopsies, or change in Gleason grade on future biopsies.
53 yr old man father dx with PC 19 yrs ago – radiation , no recurrence
I get annual screenings. I had a rise in PSA- it was 4.8 , normal DRE- Biopsy was told rt apex, 2 of 12 cores Gleason score 6
I wasn’t told of perineural invasion but before we discuss treatment doctor wants bone and cat scan…
Hi, What do you think of this: 57 years old, PSA 5.6 so I had a biopsy. 12/12 cores positive at various levels, 100% down to 65%. Gleason 6 on each core.
Wait or action?
12 of 12 a problem. Hope youve done something. Sorry i didnt get to this in a timely fashion, there was a problem with the site that I was unawate if.
The January 2014 Oncology article, “Gleason 6 Prostate Cancer: Serious Malignancy or Toothless Lion?” is quite a good review of current knowledge about what Gleason 6 means. Go to
Hi. Thanks for the site. My wife found it for me. I’m 56 and after PSA advanced from 4.1 to 4.5 over 6 months my primary care doctor recommended a biopsy. I waited six months, but afte the PSA rose to 4.9 I agreed and in August 2014 had a Gleason 6 in 10 of 12 cores, plus a tiny but palpable something on my prostate (which is *not* enlarged). I’ve waited till February 2015 and had some Mass General doctors review my situation, and they strongly recommend treatment, which I’m now starting.
What’s frustrating is that nobody seems to know whether Gleason 6 cancers progress to “real” cancers over 15 years’ time. There’s actually some reason to have a preventative prostatectomy even without any symptoms— after all, it does prevent prostate cancer! The big question is whether someone with a Gleason 6 at age 56 is more likely to have metastasizing prostate cancer in the next 25 years than someone who is clear at age 56. A secondary question is whether it’s safe to wait till a Gleason 7 in multiple biopsy cores develops and then start treatment. Looking at statistical results in studies is not so helpful as would be case descriptions, I think, because the science is so unsettled.
Still another question: why does anyone with Gleason 6 cancer go with surgery? My doctors tell me surgery and radiation do about equally well, but surgery has worse side effects. Surgery does have the advantage of being just one operation plus recovery time rather than 40 treatment sessions— is that the real tradeoff? Or is it that patients want the little bit of added security from having the prostate removed?
Multiple cores positive is a problem. No way to tell if a 6 morphs into a 7 without repeat biopsies.
These are all difficult questions. Typically, Gleason 6 does not need treatment. But if many cores positive you might want treatement. Radiation vs surgery a tough one. There are new radiation therapies such as Cyberknife that take only 5 sessions not 40.
Do you recommend any specific brand for the vitamin and supplements listed here, and also if you have found a prostate supplement that contains most of these?
My urologist says I can do AS, but oncologist says no. Here is the PSA history before biopsy: 2.5 in June 2006 , 3.2 in March 2012, 3.8 in April 2013, and 4.3 in October 2014. Biopsy in November 2014, 16% of 1 out of 12 cores , stage 1 , gleason 6. Prostate size 40cc.
You can do active surveillance and I buy supplements from Life Extension Foundation
I am 71 yrs old. Here are my PSA Levels:
Jan 2015 5.9 Free Ratio: 16%
Dec 2014 5.6
Apr 2014 3.8
Apr 2012 2.8
Apr 2010 1.8
Apr 2008 1.7
The Jan 2015 PSA was taken immediately after a vigorous DRE which I thought was a bad choice. I then went to another specialist and he said that I should have a biopsy.
I don’t know what to do. From what I have been reading at age 70-79 your PSA is OK at 6.5. Three Dr’s said the DRE was really good…smooth and small.
Why I am confused: What are they biopsying? If the biopsy is negative…do I have to do this
every year. Why not try to find out if I have BHP or a urinary tract infection before the
biopsy rather than after. I understand that although routine these biopsies are painful and subject to infection. If compared to BC a women doesn’t get a biopsy until something is found. Otherwise they could be sticking her with needles the rest of her life. Sort of like looking for a needle in a haystack….Could someone help me out? CONFUSED! Thanks!
Sorry I didnt get to this til now. Had a problem with site. PSA not that important. See what biopsy shows. If nothing found, good. If Gleason 6 found still may be ok if only one or two cores positive.Biopies no fun but not sure how else to do. Can get MRI but still won’t show grade.
Hey Guys..i submitted a blog about 2 yrs ago when first diagnosed but i think it was lost in cyber space. i’m 64 yrs old 5’11” 160 lbs well controled diabetic. diagnosed with pc a little more than 2 yrs ago with 3 of 12 pos cores. r apex less than 1%..L base 3%..L mid less than 1%.. all gleason 6..psa at time of biopsy 4.3…vol 72 gms..all dre neg..grade t1c…have been on active survellence for over 2 years now and have noticed no problems..i see my urologist with the VA every 3 months for a psa and discussion. for 2 yrs my psa has stayed between 4 and 5. when i saw the urologist 3 months ago we talked about another biopsy and the more we talked i realized he was really trying to talk me out of another biopsy at this time. i guess since my psa has been so stable he doesnt think a biopsy is warranted at this time and suggested we talk about it again in the spring..fine with me..Michael, im thinking about getting a prostate MRI on my own(VA does not do prostate mri’s at this time) i found a place about 5 hrs from me( i live in the middle of nowhere) that charges $900 for the mri with a doctors reading and dvd with about 500 pictures of the prostate..do you think that would be a good idea? i see my urologist tomorrow and when the office called today to remind me of the appointment i ask what my psa was(had it taken a week ago) and she said it was up to 6.1..(4.9 three months ago)is that a bad jump? i have been taking curcummin, resveratrol, pomegranate, oil of oregano, vit D3 as supplements for 2 yrs.. the only prescriptions i take are metformin (which i read is good for PC) for diabetes and 5mg of terazosin which really helps me go at night (usually 1 time) a couple of questions …how does prostate size in grams relate to size in cm? do you think getting an MRI at this stage is a good idea? do you still think Cyberknife is the way you would treat you pc if the time comes for need treatment?..i am so glad i found this site 2 yrs ago,,,lets me know im not alone in this journey..im losing my insurance at work at the end of 2014 thanks to obama care and will have only the VA to rely on until next summer when i go on medicare…the VA has been really good to me since my pc diagnosis and would recommend that any viet nam vet with pc get involved with the VA due to your exposure to agent orange…thanks for listening and good luck to all…JB
It seems like everything is going well, so I see no urgent need for an MRI, but it couldnt hurt if you want to spend the money. Maybe you want to wait til you are 65 and on Medicare, then it will be free. The jump from 4.9 to 6.1 PSA is nothing. Wait to do several to see if there is a pattern there. A gram is the same as a cc when measuring size. I am not currently considering treatment but would keep cyberknife in mind if I had to be treated. I am going for an MRI in January, it will be used for comparative purposes to the last one I had several years ago. If it is about the same, no need for another biopsy.
55 year old in good health, with good diet and excercise, was diagnosed PC last week, PSA 4.3 , one core out of 12 , 16% of the core , Gleason 3+3. The report did not specify stage of tumor.
My question : is there a test to map out the size and precise location of the tumor? This will help with choosing active .
I am 67. After 4 biopsies the last showed 3 bad samples out of 37 taken. My Gleason score was 6.My PSA skyrocketed from 9 to 17 prior to the biopsy. The cancer is staged at T1C. I’m sure that radical surgery is going to be pushed. Am I wrong to go for watchful waiting
as long as my other tests show that the cancer has not spread?
My fear or long term side effects from surgery is what is driving a watchful waiting approach.
Did you retake the PSA? Sometimes the numbers spike for some resson, like you had sex the day before or went for a bike ride.
When we give our PSA level, shouldn’t we mention the normal range, since it varies from lab to lab?
It would be best to have it done at the same lab each time, but I don’t really understand your question. When we “give” it to who?
Oh forgot to mention Im 62
Hi. Stumbled on this site and am happy I did. Looking for some general sense/direction as to next steps.
I’ll try to briefly describe my situation…
Normal PSA ran around 3.6…had prostititus 20 years ago
On 4/13:PSA 4.2
On 12/13:PSA 6.2
Internist recommended Urologist visit; DRE nothing, another PSA 7.0
Had Biopsy(ugh): 20 samples 18 clean 2 suspicious – not confirmed cancerous (diagnosis was I believe ASAP)
PSA was still 7.0
New PSA 10/14: 8.8……
Obviously my Urologist wants a)PCA3 test…b)another biopsy
Im an alternative health guy and even if I finally received a cancerous diagnosis – which I havent gotten yet…I feel Id try other methods to improve my prostate health…..just kinda feel like its a never ending revolving door of testing. Ugh….
Any feedback is appreciated
Maybe another biopsy in a couple years. And 20 sticks is torture. 12 is plenty.
chrysin,which is a powerful flavone and found in honey has a powerful impact on apoptpsis,causing cancer cells to die has been shown in lab testing.Also,saccharin has been recently found to be able to keep an aggressive cancer from forming.In lab mice it showed large amounts could cause cancer,but the human system produces a protein to protect from that occurrence.Soy products,tofu and vegetarian hamburgers keep cancer growth in the prostate from forming or worsening.Soy pill,genestein can be taken.Japamese men have very low incidence of prostate cancer as a result.
I’m 65 yrs old. On 03/24/14 my total PSA was 3.3 —04/15/14 it was 2.4 —07/28/14 it was 2.5. At the same time the PSA’s were taken they also had 2, PCH-3 tests done. On 03/31/14 the score was 133 —on 08/07/14 it was 178. a biopsy was recommended. I just got the results this week. 12 samples were taken, eight of the 12 showed cancer. One sample showed 20% another showed 10% and 6 showed 5%. My Gleason score is 6. I will have a full body PET scan and a CT scan on 10/23 to determine if it is anywhere else besides the prostate. I do have BPH and have been on Rapaflo on and off. I have tried saw palmetto, nettle root and pygeum extract over the years to help with urination but the rapaflo seems to work the best. I don’t like the retro-ejaculation side effect from the Rapaflo. I am in good health. I work out 4-5 times a week eat a healthy diet keep my weight down. I have found this web site and I am writing to get some opinions of what might be a course off action towards treatment once the scans are done and I consult with my doctor. Right now I am leaning towards watchful waiting.
Eight of 12 cores with cancer is somewhat concerning.
I understand that if the free psa is over 20% the odds of the total psa being caused be cancer progression would be relatively small. (higher is better?)
My high psa is caused by BHP, so in my mind it’s the free psa to watch, am I looking at this the right way?
from the date of my biopsy/diagnosis my psa has stayed the same at 6.5
I guess I confused the question, I know the amount of cancer found. It’s the amount in % of free PSA I am wondering about, and its values of watching.
That’s what the urologist wont comment on.
Not sure why not. Isn’t 15 percent of some significance? I remember when I first had mine tested I waa just shy of that. Didnt seem to matter.
Two years ago I was diagnosed with Gleason 6 PC, one positive core 1mm and
found mostly BHP, my psa was 6.5 at that time.
I’ve been watching and waiting since.
My one year “gold standard” last Dec/2013 biopsy was refused by myself and opted for an
MRI with the latest high resolution Tesla 3 it saw nothing other than some spinal
stenosis, it also measured my prostate at 66cc.
My psa has hovered around 6.5, with a 66cc prostate that would be a normal range.
This new urologist is reluctant to tell me my free psa or % ratio, saying it’s irrelevant
knowing that there is cancer present.
My question is, is it irrelevant? it would seem to me it’s rather important to know how much
of the psa is caused by cancer. I am by no means down playing the PC,
but I just cant help but feeling like they are trying to break me down and not showing me all
Your urologist is nuts not to tell you the percentage of cancer in each positive core.
Just back from appt with Dr Scholz in Marina del Rey. 6 months check up. Got sonogram, regular blood tests as well as brand new test, not covered by insurance–$412–supposed to give same results as biopsy with getting one. Sonogram–doc said–“not bad”, same low blood flow since first test in Jan 2013, same size, same place on gland. So no changes. Then new blood test—guesses i have gleason 7-8–have high chance of advanced stage–although there has been no changes in each 6 months test since Jan 2013. I read article that says low risk prostate cancer has gleason 6 0r 7. So once again they are pushing much harder to get biopsy–then move to treatment–surgery, chemo, radiation. I always send my results on blogs or forum to get feedback from other guys, plus what their prostate, conditions, decisions are–or what you would do in my position?
Your post is confusing. You aren’t sure of your Gleason score?
So get the biopsy and then you’ll know what your Gleason score is.
Yes Bob, The way I see it you only have three real choices. (1) Run out and get operated on and “cut it out” and get “cured” (that is if the cancer isn’t spread by the surgery) and live out the rest of your life dealing with the all of the debilitating side effects while continually watching and hoping that your PSA never recurs. (2) Follow Michael’s advice and doctor shop and deal with your cancer that shouldn’t be called cancer by watching and waiting … and watching and waiting … watching and waiting … now 12 years and counting … watching and waiting … it worked for him … watching and waiting … kind of a catchy phrase … might be a perfect name for a website … watching and waiting … a pleasant sounding never ending way to while away the hours of your golden years. Or (3) Do just a little bit of research and realize that you made a horrible mistake ever getting a PSA test, let alone a biopsy, and forget it ever happened and go out and try your best to just enjoy the rest of your life.
Ed, just a note of appreciation for your sensible approach which contributed to my decision to forgo any further PSA tests and everything that results therefrom. It’s been almost four years since a urologist said I had “no choice” but to submit to a biopsy based on a fluctuating PSA that could have been explained by any number of benign conditions. No problem so far. Thanks also to Michael for the free exchange of ideas on the site.
I am 63 and just found out I have PC (hard to even say the C word). My Gleason score is 3+3=6 and PSA is 1.94. I am T2a. After hearing that the cells were malignant (2 core samples), my urologist laid out the options. We eventually settled to watch and wait with a PSA test in six months and another biopsy next June. I think that’s the right decision, but after going on the net, the amount of information is overwhelming. Do I stick with the urologist? Do I go to Mass General where they have more resources? The supplements, the nutrition, exercise. It’s just so much. Help! Someone help me sort this out.
First of all, stop worrying. Gleason 6 cancer is hardly a cancer at all. Many docs don’t even call it cancer. Your PSA is low, you only have 2 cores positive (you don’t say what percentage of each has cancer), so those are good. The fact that the cancer was feelable during the rectal is a negative and that I guess is why you are deemed a T2a. Nevertheless, I’d say watchful waiting is right for you. If you want a second opinion, go to my doc, Glen Bubley at Beth Israel. He is the best. He is an oncologist who specializes in PC, so he does not have a horse in the race, so to speak. Won’t be biased in favor of surgery or radiation or watchful waiting. Best of luck. I’ve been doing this 12 years with him watching. So far so good.
Its rare but sometimes you can track down news stories and put together some semblance of the whole story even with the limited medical facts they provide.
This guy was a believer in the “for profit” medical industrial complex and apparently is still a believer. Diagnosed in 2011 at age 54 with minimal PSA elevation and a one of 12 minimal positive biopsy. He was probably scared into surgery because his dad died of pc at 80 (it would be interesting to know but there are no details on his dad’s treatment). He chose “state of the art” robotic surgery (all of my research says its worse). Afterwards he was told he was cured. Now this guy will probably be lucky to reach 70 whereas left alone I believe there’s no reason to believe he wouldn’t have outlived his dad’s old age.
The advertising says this guy’s surgeon performed more than 3000 robotic prostate removals but nothing at all about how many times recurrence like this happens. Good luck with trying to get that information out of the medical industrial complex or even any kind of a real data on whether the actual number of people saved by treatment is higher than the number who eventually die earlier because of it.
WKYT’s Sam Dick recovering from prostate cancer surgery: http://www.wkyt.com/cancer/headlines/WKYTs_Sam_Dick_recovering_today_from_prostate_cancer_surgery_111603349.html
Sam Dick: Robotic Surgery: http://www.vicc.org/news.php?page=2011/06/sam-dick-robotic-surgery/
WKYT’s Sam Dick faces setback in battle with cancer: http://www.wkyt.com/home/headlines/WKYTs-Sam-Dick-faces-setback-in-cancer-battle-266664811.html
My husband was diagnosed with prostate cancer in November. His PSA was 4.2 and cancer in 4 of the 12. Two involved 10% and 2 involved 5 10% in areas biopsied. He is 61 years old. A subsequent PSA six months later was 2.9. He had a second opinion from a urologist at KU Med Centet and also sent his biopsy to Johns Hopkins who confirmed 3+3(6). He has not rushed into anything but now his urologist is pressuring him to “do something”. He is active and healthy. Of course our concerns are the possible side effects and risks with radiation or surgery. Why is it so difficult to “know what to do”?? This Dr owns a radiation operation…
Get a second opinion from a doc who doesn’t have skin in the game. A medical oncologist who specializes in prostate cancer and who can help you in the decision making process objectively.
I am 64 years old. I first found out that I had a high psa in March 2013. I had a PSA of 4.33 in January 2009 but that doctor saw no problem with it. Since then, my PSA has been 6.45 (Jan 2013) and they sent me to a urologist., My biopsy showed “benign prostatic tissue on 5 of them. On the sixth sample I had 3+3 on two of three cores (2mm, 15%, and 1mm 10%). He didn’t see any cancer in the ultrasound, nor through the DRE. I started eating brocolli, taking green tea capsules, and changing my diet a little. Then I found this site and decided to do Active Surveillance. I’ve also taken the other tests and was told I have degeneration of the spine. So I started taking vitamin D3. Since that time, my results have been 6.18 (August 2013), 5.78 with the free PSA showing I had a low probability of getting prostate cancer (December 2013), I had sex within 24 hours of taking the PSA on March 2014 and my PSA jumped to 9.36. In April 2014, my PSA fell down to 7.69. Months ago I asked for the Oncotype DX test. At my next visit, he had sent the results to another doctor. A couple weeks ago I asked for the results and was told they are inconclusive. Today, he told me that my Oncotype DX test has me at a 25% chance of getting a more aggressive tumor and a 75% chance of not getting a more aggressive tumor. He told me I’d need to make a decision on what I wanted to do. Then he performed the painful biopsy. He usually tells me if he sees a tumor, but said nothing. At first he did the DRE and said nothing. Then he took 16 core samples. I’ll get the results next Tuesday. I am African American and I wanted to see what diet would do. To be honest, I haven’t gone strictly with not eating sweets and I love macaroni and cheese. I might have a meat loaf every now and then. Now, I eat mostly chicken and fish. And I’ve added cauliflower to my diet. I’ll see how things go next week.
You already know you have a trace of low grade cancer based on your first biopsy. Lets see what the 16-stick biopsy has to say. Then I will give you my thoughts.
I got my results today and I guess I’m out of the club. Of the eight, my prostate right base has a Gleason score of 4+3 = 7. Of the three cores, two are 25%, 4mm; and < 5%, <1 mm. Perineural invasion was also identified. So I have to schedule for tests over the next two weeks, and then we talk in two weeks about what kind of procedure I'll have. The other seven are benign.
The gleason 7 is a concern.
I recently had a biopsy with a Gleason score of 6 and was told it was low grade and small in relation to the core. I asked my urologist about the individual scoring the T scores of the biopsies and he said they consider all of the low grade patterns the same and don’t bother to distinguish between a 1,2,3. Is that your understanding of the current thinking. He recommends (I am 62) watch and wait
Low grade is a 3. To my knowledge, there are no 1’s or 2’s.
I would like to share my experience. I am 53 years old , I was diagnose with Gleason 6 ( 3+3) last January. My total PSA was 4.3 and the relation between total and free PSA was almost on the limit but ok. My health condition was very good, all blood tests results were ok, except total PSA. Then I stared to discuss with doctors and try to learn more in order to take the decision regarding surgery or watch. All urologist I have the opportunity to talk strongly recommended to surgery procedure. Fortunately I have decided and I had the surgery about 30 days ago. The surgery was a success and I am very well now and without any side effects. After the surgery the doctors examined the prostate and the cancer was contained on the prostate, but the Gleason was not 6, as showed on the biopsy I made in January but 7. The doctor told me I made the surgery on the right time. It is not clear if the change in the Gleason from 6 to 7 was really a change or the biopsy procedure showed a false result, anyway that is the reason I would like to share my experience.
Sometimes a Gleason score of 6 on biopsy actually is a 7 when more tissue is able to be examined following surgery.
Can PC be cured, or contained, using watchful waiting? My stats indicate maybe. I am 71 and have had 3 biopsies over 6 years. My first biopsy (6 cores) indicated 5%, Gleason 3+3=6. My 2nd and 3rd biopsies (12 cores ea) indicated no tumors present. Three cores indicated rare atypical glands present but technically acceptable and no tumors found. Urologist suggests continued PSA every 6 months, and another biopsy in 3 years. Current PSA 4.3. Eating mostly vegetarian, exercise, and taking prostate support supplements.
it is possible your second and third biopsies just missed the tumors that are still there. However, depending on how strict your diet and exercise program is, you may have shrunk your tumors. Dean Ornish has proven this can be done following his diet.
Welcome to the new version of my web site. The site crashed a few months ago and some of the most recent posts were lost forever. Now, it is up and running and can accept new posts. Welcome back!
Good site. I would suggest along with PSA, do a PSA% free and PAP. My PSA varies, due to different labs, but probably more so because of BPH. The other two have remained more constant. I believe in doing PSAs (and others mentioned), but the trick is to not panic. In 15 years my highest and lowest came within 6 months of each other. I have been AS for 10 years now. Am little concerned that psa average is slowly rising, but still around 7. Good luck guys.
I have had three MRIS tests. After the last, Dr. Wheeler in Sarasota suggested I get HIFU by him. It would cost $32,000 since I would have to go outside the country because it’s not approved here. I’m trying to get another opinion and contacted Dr. Chen at Fox-Case Philadelphia. I’m skeptical about seeing him in May since I ‘m told he is a surgeon and that HIFU isn’t the first choice. I am looking for a prostate oncologist to help me with AS and used the list in the book “Invasion of the Prostate Snatchers” to help find one. I’d like to hear opinions on the situations I’m describing.
I am closed with yours Adam, I am 42. I have Gleason 6 too. My urologist accidentally found it when he did biospy since I have OAB and bladder neck obstruction. He told me not too worry about it and asked me to do psa again in Jun 2013. So please consult your urologist carefully before taking surgery action which may not be necessary. By the way, what was your main reason to take the bladder incision? Is there any improvement after this? Please share more details. Thanks
My husband has just been told he has been detected with prostate cancer – Gleeson score of < 6 —- you say you also are a score of 6 but you do not mention anything regarding staging which is more important that gleeson score – as staging gives you a more detailed idea of how bad the cancer is & whether it has spread to other parts of the body – I am very interested to know what your staging has been – please ?
First of all, I am 44. Last week I had a neck bladder incision and TURP performed. My surgeon called today and said they found I have Gleason 6. Up until today I hadn’t even heard of Gleason 6 (or any of his relations, 1-10). Hi is suggesting a biopsy and then if it is confirmed – surgery. Having done just a little reading – that scares the heck outa me. Problem as I understand it is my age. Should someone my age be a wait and watch candidate? By the way my PSA is somewhere between 11 and 13 depending on whether I’m fasting or not. Comments welcomed. Thank you, Adam
I stopped in to see my urologist and asked for his opinion about my reduced PSA and the jump to near normal of my “free PSA.” Did he believe it was the year-long course of antibiotics following two UTIs or the 6 months of tumeric mixed with black pepper. He answered that it was most likely the tumeric (specifically the compound, “curcumin”);
. I am continuing the twice daily teaspoon of tumeric mixed with black pepper and tomato juice. I was a bit surprised by the doctor’s somewhat ambivalent reaction to the new numbers. A 3.8 PSA is high, but it’s not unusual for a 60-yr-old man with an enlarged prostate. My free PSAS went from the low teens to 21%, close to the ideal of 25%. Bruce Paul, my uncle has experienced his own problems following any number of biopsies. He is 82, in a wonderful relationship with a great woman, and has been impotent for a few years. Doctors could not explain any reason for his impotence and it’s been suggested that a major nerve on his prostate was nicked during a biopsy. Overall, PSA testing seems to create more problems than it resolves.
Thanks for the recent interesting posts, especially Edward N, whose experience is similar to mine, except that I dropped out of the PSA testing regime altogether after finding out how unreliable and even dangerous it can be. Like you, Edward, I had an uncle on my mother’s side who had prostate cancer, but nobody else in the family. He was diagnosed shortly after they began psa testing in the late 1980’s. Unfortunately, his condition worsened greatly after he had his prostate removed. It’s possible he would be alive today were it not for psa testing, though there is no way to know for sure. On the issue of things that can cause a jump in psa, the one that really gets me is “urinary retention,” which many doctors say can significantly raise the psa level. I seems logical that anybody with even a slightly enlarged prostate is going to experience urinary retention, because the urinary path is partially blocked. So it is built-in that if you have normal enlargement of the prostate, your psa is going to go up, not just because of the larger prostate, but because the pressure on the bladder is greater. Edward, I could not agree with you more that most prostate cancers are normal and will not pose a significant risk in the lives of most men. That is why the doctor who invented the psa test has called how it has been used a “public healthcare nightmare.” Thanks for the excellent post.
Thanks for this site. I’m 63 years old. I was diagnosed in February of this year with prostate cancer. I have been monitoring my psa for several years because my Dad had prostate cancer. He had it removed and died years later of multiple melanoma. In Dec. 2011 my psa was 4. My Dr. sent me to a urologist, where it went to a 4.8. I had an in-office ultrasound biopy with negative results. (The procedure didn’t bother me, but I can still hear the click of the probe as he took the samples) PSA stayed the same until Dec 2012 when it went to 6, then to 5.5 in January. Another biopsy was suggested. I opted for an out patient since he would be able to take 24 samples opposed to 12 in office. Again it went smoothly, no problems or after effects. The pathology report shows cancer in 30% of one sample, rated as low risk. It is local. Gleason is 6 (3+3) which Dr. said is good. Urololgist recommended watchful waiting and I agreed. I’ll have followup every 4 months and biospy in a year. I’m comfortable with going this way. I asked my Dr about dietary & lifestyle changes. He said there isn’t a lot of research on diet affect on PC but told me to do what I wanted, that they’re always open to learning new things. I research everything and this is no different. I have changed my diet, eliminating as best I can dairy, sugars, etc. I am taking curcumin (turmeric) and ginger root, both of which I learned can affect the ability of the cancer to grow. I am open to natural supplements and continue to do research. I believe in taking charge of my own body and treatment and will do what I can to lower the chance I need surgery or other treatment. But the most important treatment for me is prayer and my faith. I have many people praying for me I know that helps. I have a lot to live for – a wonderful wife, three sons, a stepson, two daughters in law and seven grandchildren, all under the age of 10. I plan to be around to see all of them grow up. Thanks to all of you for being open and posting your story. Reading them is encouraging. God bless all of you.
My hat is off to your astute command over this topvi-braco!
Steve, you are doing the right thing.
McKay. I would echo Michael and Kevins advice particulary with regards to diet. I’ve been on AS for 3 years and reduced my PSA from 4.3 to 1.5 which has remained stable by eating no food containing Sugar, Flour, or Potatoes. If the Dean Ornish Vegan Diet is too difficult, you could check out the Dr. Snuffy Meyers Mediterranean diet [ Videos on YouTube and his website] along with his Prostate Cancer Arrest Program.
My story — I first visited a urologist for ED after having noticed I was no longer experiencing nocturnal erections. How was I to know it was all psychological based upon an unhappy marriage, which I later corrected? But, as I progressed through my 50s the doctor began with PSA testing. Initially, everything was fine, but then my numbers began to creep up. It was also determined that I had a slightly enlarged prostate, nothing that was causing serious problems. When my PSA began to climb above 3.0 my physican became concerned, but when the blood was drawn for the test it was around the time I was experiencing a sinus infection. After taking some antibiotics for the sinus infection I opted for another PSA test and the numbers had dropped. Fast forward to this past year when I experienced a urinary track infection, treated with Cipro and then a second UTI, also treated with Cipro. We never identified ther eason for the UTI, but around the time of the second infection we did a PSA test and it had jumped from 3.4 to 4.6. Prostate tissue is difficult to clear of an infection, according to my doctor, so I requested a long-term treatment and we began a year-long regimen of a less potent antibiotic. Six months after I began the regimen my PSA still registered at 4.6 and my free PSA was hovering around 13%. Not good. It was immediately after the second PSA I started researching what I can possibly do to avoid getting a series of biopsy needles puncturing me for core samples. The only history of prostate cancer in the family that we know of is an uncle of mine (mother’s brother) and a great grandfather who may have had prostate cancer or bladder cancer — they weren’t sure back then. From internet research I learned that prostate cancer is almost unheard of in India — only 4% of the men ever develop it and most doctors don’t check for it. Medical researchers believe it is the high quantity of tumeric that is consumed in the curries over the course of many years. Tumeric contains a compound called “curcumin,” which apparently is extremely good for inflammations and researchers say it causes apotosis (cellular suicide) with cancer cells. Of course, the underlying problem is that in the States men don’t consume small quantities of tumeric throughout our lives. But, reading that it was safe to consume large quantities of the spice, I decided to give it a whirl during the last six months of the antibiotic threatment. After all, I am a problem solver and I am unaccustomed to not being proactive. I began consuming a teaspoon of tumeric twice daily mixed with either V-8 juice or tomato juice (about 1/2 a glass) — morning and upon arriving home from work in the late afternoon. The tomato juice is also ideal due to the lycopenes. Three months after I started the combined regimen of completing the antibiotic that had been prescribed and the tumeric cocktail, I learned that tumeric has a pretty awful rate of bioavailability (absorption) into the human system. But, black pepper apparently contains a compound called, “pipercine,” which apparently dramatically improves the bioavailability of tumeric. For this reason, I began to mix 3/4 of a teaspoon of black pepper with the teaspoon of tumeric and the tomato/V-8 juice and followed this for the last three months leading up to my next PSA test, which was last week. This week I celebrate my 60th birthday. The results must have pleased my physician as he would have called to have me make an appointment had he been concerned. But, taking an action that he’s never done before, he circled my latest test results and dropped them into the mail to me. My PSA had dropped from 4.6 to 3.8 (not great, but improved) and my free PSA had increased substantially — from 13% to 21%. Much better. Futher research, however, has me seriously questioning the efficacy of PSA testing. Any kind of infection is liable to impact the test. After all, if you get a sinus infection, who is to say that it doesn’t also find it’s way into your prostate? Bacteria aren’t that intelligent that they think, “Hmm, I’ll invade the sinuses, but I won’t go anywhere else.” We know that a PSA test can be impacted by sex, inflammation, infection, BPH, age, and any number of other possible reasons. I sit on a hard chair at a computer most days — I’d be willing to bet that the pressure of sitting on a hard surface will impact the numbers. So, I find myself on this merry-go-round of testing every six months for something that turns out to be quite controversial and that more and more physicians are challenging. Perhaps the PSA test is best used in young men up until age 50–men for whom any rise in the PSA could mean an aggressive and possibly hereditary form of prostate cancer. As we men age into our 50s, 60s, and 70s, perhaps prostate cancer cells are the norm for most of us — dormant and best left alone to avoid creating a problem where a problem didn’t previously exist? My wife was skeptical of the tumeric until she was at an Asian grocery store purchasing a bag of the spice for me. When the gentleman behind the counter asked why she had been buying the spice in such large quantities she explained that her husband was using it for health purposes. An Indian gentleman standing behind her over heard the conversation and chimed in, “Yes, I take it every day. You know, it’s very good for men’s health.” That convinced her. Are my improved numbers the result of the tumeric, the antibiotic, and two weeks of solid walking while visiting Italy for vacation? I’d like to say it was the tumeric, but I’m guessing it was a bit of all three. But, where my wife had been skeptical for most fot he six months she is now a believer. Her comment to me upon receiving the test results as that first thing in the morning I was to resume my twice-daily cocktails. The tumeric does alter the flavor of the juice a bit — it gives it a very earthy flavor, but it’s not objectionable. I’m likely going to return for another PSA in six months just to see if the improvement continues, but after that I am of a mind to stop the vicious cycle of testing until something suggests a biopsy leading to the potential of never-ending biopsies and the risk of infection and/or other problems. It seems that men are destined to get prostate cancer as we age. Perhaps that is really the norm and we should just leave it alone, except for those with aggressive and problematic prostate cancers.
I am 68 and during a resent two month period, my psa increased from 4.1 to 4.7. The biopsy found 7 out of 12 cores positives with involvement from 2 to 70% all with Gleason 6. The prostate is 80 grams. I am scheduled for surgercy in two weeks but am not happy about it. My grandfather died of prostate cancer and one of my brothers just had his prostate removed. Is watchful waiting an opinion?
John, The 7 positive cores are a concern. Why surgery? What about brachtherapy or cyberknife?
Michael, in the 6 months since I was diagnosed with PSA 6.4, Gleason 3+3, 40% in 1 of 12 biopsy, I have wanted AS instead of seeds. I’m almost 65, healthy, with a lot of life ahead of me. But everybody in my area is against it. Most people know someone close who has had seeds and is benefiting. However, when I went to a local meeting, none of them had a good story to tell, and the situation is similar when you drill down into more stories that show incontinence and infection as possible outcomes. My aim is to preserve what I have until the (unlikely) total cure comes along, and as a result of reading your site – along with many others of course – I have decided not to even do AS. My decision is based partly on the data available, but mainly on the uncertainty of treatment. A true self diagnosis! I can tell you, it’s a strong test of character to go against public and medical opinion, but if you and others here can do it, so can I. Like most other men in my situation I have changed my lifestyle and diet, though I have yet to find commonality for the type of supplements to take. I am certain one of the best methods for improvement, both for PC and health in general, is to avoid all sugars, natural and processed. Cancer attracts sugar as we know. Therefore giving it little to grow on will solve some of the problem. For the previous 20-30 years and longer I was a sugar addict and I’m sure this has been the downfall in my prostate issues now. I’m not naive enough to believe avoiding it is the complete answer, but the trend is towards treating this substance as strongly as any drug or smoking. And finally, I’m grateful beyond words for the sensible encouragement you and others here give on this confusing and difficult path. Good health to you!
Hey guys — I\’m 46. I was diagnosed last Wednesday, (2/20) with PC. My PSA was 2.7 and 2.8. I had a biopsy done at the suggestion of my urologist. The pathology report came back with a little in the left base. My Gleason score is 6 (3+3). My staging is T1c, low risk. I am a pretty healthy guy. I run a lot (marathons and eat well) Needless to say, I am freaked out. Any suggestions or advice any of you can offer would be greatly appreciated. I am supposed to go to a 3 hour educational class on Friday, madated by my HMO. Thanks, guys. I really appreciate it.
McKay, Your cancer is insignificant. However, you are pretty young. As a result, you may get pressure to be treated. I still think you can watch and wait. I was diagnosed at age 53 and am still untreated. At the least you can buy some years until they come up with a more gentle treatment. Just keep a close eye on it. I wonder how you found out you had cancer. Did it start with a routine PSA? Cause you are sort of young to even have one. Anyway, nothing to freak out about. You should be fine.
Thanks, Michael. I “insisted” on a PSA. My dad was diagnosed with it.. .and they watched for a long time. I was trying to be pro-active and wanted to make sure I was covering all my bases. My DRE was negative and so was a CT scan they did. I am also wondering if anyone has heard much about cryoablation? Also, is it possible to “freeze” out the bad cells and rid yourself of this or have it “revert” has anyone heard of PC clearing up? Going away? Or is it here to stay and will eventually get worse as time goes on? Thank you.
McKay, My father had been diagnosed with it too, but at a fairly old age. He did not get treated per se, but did get a couple of hormone shots. He died at age 88 of something else. If you look up Dean Ornish’s diet, he has shown keeping to this diet can reverse prostate cancer. But it is very hard to stay on. Im not sure what you mean by cryoablation. The typical cryo treatment is almost certain to leave one impotent. I’d just watch and wait and if the cancer seems to be making a move, look into the treatments that are available at that time, since it will be years from now.
Tim, If you are still a gleason 6 and your psa is still under 10 I would think youd be ok to stay on ww/as. As fir treatment, if u decide you cant wsit, have you looked into cyberknife?
Michael, my last psa was 9.94ng/ml on 12/29/2012. The 60% and 70% cancer volumes are also a concern. Psa will probably be over 10 soon. It is hard for me to justify continued AS. The EBRT I am considering is called “Truebeam” . It seems similar to Cyberknife. I think TB delivers a lower dose over a longer time than CK. TB is also computer guided. There probably is not much overall difference in the systems. However I will mention it to my DR.
I last posted here in March 2007. On 04/26/2012 my psa was 8.58ng/ml. I had another biopsy on July 12, 2012.Here are my biopsy results: -Left base peripheral 10% with perineural invasion Gleason 3+3 -Left base 5% Gleason 3+3 -Left mid peripheral 60% Gleason 3+3 -Left mid 70% Gleason 3+3. Now my psa is almost 10ng/ml. I have been AS/WW almost 10 years now but a treatment decision is still very difficult. Perhaps a decision should be made within a few days. Does AS/WW make treatment decisions even more difficult? I am leaning towards EBRT. Any thoughts from you guys?
Hi Neil here again You can read my story back in October I think Gleason 6 one core 10% Well after being on the Active servailance train for a year now I went back to my uro before Xmas and after looking at my years psa’s (2.8 2.7 2.2 2.9) he saids to me “time for your second biopsy but I don’t expect to find any cancer “I said so are you saying its gone he saids “no but it’s so small I think we will be lucky to find it again but here’s the hospital admin form anyway and my $1100 fee for the trans recital biopsy see you when I get back from holidays at the end of January” so for the last five weeks I’ve been trying to decide wether to have it done or not he saids he probably won’t find anything so I don’t know what to think anyway my local doctor saids I should go ahead with it so tomorrow is the day. Stay tuned I think he’s just feeding his pockets but better to be safe than sorry I suppose but my last PsA of 2.9 makes you wonder.
I have just stumbled on your site, and the information and blogs have done more to help me than anything I have read or been advised during my many months of stressful research. Not least, that I now feel much more confident in accepting a watching approach to my prostate cancer than would otherwise have done. Thank you.
I got BHP ten years ago. I used Flomaxtra 400 for 5 years. My PSA was always high – around 17 for 2 years. Last PSA rest in August 2012 was still 17. Biopsy in August 2012 with result: Prostate cancer Gleason score 3+3 = 6.After biopsy, i got incontinence for 10 days and having catheter for that time. My urologist discussed I should chose “active surveillance” . I will have biopsy again in May 2013. I took alot of antibiotic to cure infection in the past ( prescription by my urologist). I worry about my PSA, even my urologist – he have not known why? I read on internet about HIFU treatment if my urologist recommende I need treament to avoid surgery and radiation. Please give me any idea relevant with HIFU, high PSA… Thanks. (Sorry about my English, thanks)
yes Bruce.i have to agree with you..i have one biopsy aready.not pleasant..2 cores out of 10 positive for gleason 6…my own uroligist said he would never give himself a psa test..but because od medical protocol..i need to be tested every 3 months with a psa test..then more biopsys if nessesary..i read the stats…only people who are benefiting are the doctors who are getting paid to treat something that does not need to be treated at all
I submit this for consideration by men who are being forced to consider drastic procedures based on a psa test. Two years ago, after having a jump in my PSA, but having experienced no unusual symptoms and having a normal digital exam, I was told I “had to have a biopsy.” by an eager urologist. Thanks in part to information contained on this site, I refused to have a biopsy, after doing considerable research and finding that radical treatments for prostate cancers produced minimal benefits, saving at most the lives of one patient for every 80 who went through life-changing procedures. There is even a question as to whether a biopsy of the prostate in itself may lead to later cancer. Progress is finally being made by some physicians in turning away from the notoriously unreliable psa test. My brother reported that his doctor’s office now refuses to even offer the psa test because, in their words, “it caused more harm than good.” It is a bit depressing, however, to read the stories of so many men who continue to be subjected to unnecessary procedures simply because of a suspect psa result. Now, two years after I was told I had to have a biopsy, I am doing fine. I am done getting psa tests. My current doctor agrees with this decision because he has seen first-hand how men’s lives have been turned upside down by a test that often means nothing. Several major medical organizations now recommend that otherwise healthy men not get a psa test. If you are considering a biopsy or an even more invasive procedure, you may wish to read earlier posts on this site before agreeing to a procedure recommended by a urologist. I am not holding myself out as an expert or health care professional, but there is plenty of useful information out there now to justify refusing to get on the psa merry-go-round in the first place.
also my age is 56..uroligist is sending me for psa test every 3 months …for active survalaince…not sure about repeated biopsys if my psa goes up…is it safe to say that if my prostate was 30 grams instead of 63 grams my psa would be in the normal range
Hi, Michael, I would like to have your or any other guys opinion about my case. I am 67 years old and I had biopsy last year because PSA elevated with a Gleason score 6 on two cores. I did a lot research, including reading everything on this site and started AS. Two month ago, I had second biopsy with four cores of cancer. Three of them 3+3 and one 3+4. All 5% with the 4 is 10% of that 5%. Second opinion from John Hopkins is, two core 3+3 and one suspicious. My doctor also ordered a PTEN test for me, which comes out saying I had Homozygous PTEN deletion in >=20% of the cell nuclei (17 of 50 cells) in Left Apex Block (which has 3+4 from that Lab and 3+3 from Hopkins). My PST is moving around 5 with high 5.5 and low 4.5 for the past year. If there is no this PTEN test, I would continue on AS. But, this PTEN test result really got me. My doctor is a very good surgeon for Prostate. He would encourage me to do surgeon even he still says I can continue on AS. I haven\\’t discussed with him about the PTEN yet. Checking PTEN on internet, I got all kind of confusion results. Please help me if you can.
Eric Obviously the gleason 9 is a concern. Did prior psa tests not show an elevated score?
Hi Michael Of you started this web site on yout own, very well done as it is the first where men can be in touc. I am 75 yrs young, just the oter day O was diagnosed with 11.8 PSA, the Gleason score of 4+5 so I am a little concerned but not too worried as I said to my son over dinner, just aftrer the results, ‘ look on the bright side for I may die before the cancer gets me ‘. Not very clever but at least he saw the funny side. I’m now waiting for my bone scan and then advice from the NHS. More to follow.
By far the most useful site I have found. I was diagnosed this week with prostate cancer with a Gleason score of 6. This was discovered by my second biopsy â€œ the first was two years ago which was clear. They were triggered by escalating PSA scores of 2.8 to 3.1 to 5.1 over the period of three years. I am 60 years of age. It is very interesting to me how statistically few people adopt the watchful â€œ approach. Best of luck to you â€œ thanks for a great site.
Dave, I don’t know too much about tomotherapy but from what I gather from a quick search it is similar in nature to Cyberknife. However, Cyberknife requires only 5 treatments, whereas tomo therapy requires 25 to 45 treatments. Also, you don’t give specifics on your case. Whatis your PSA. How many cores positive? What percentage of eachpositive core has cancer? Etc. That info would help in the decision making process of whether to treat or wait.
I found out this evening that I have Gleason 6 prostate cancer and the Urologist suggested that I undergo 40 days of tomo therapy. My age is 61 yrs. Has anyone had this and can you give me some info on this and what it did or did not do for you? Thanks
Gracio Whether biopsies are dangerous is a matter of some dispute. If you go back on this forum — way back, at least a year — you’ll see a number of heated posts back and forth on the subject. That said, I get one about every two to three years.
Dear Michael First of all thank you for have building this space and share your experience. I have also been found with PC, G 6(3+3).iam glad to know that my doctor presented to me this alternativ.WFW. My only concern is about a have a biopsia yearly.Do you have opinion about risks.? Thamk you. Hugs from Brazil
I was diagnosed in Nov 2008. I joined an AS study in the Chicago area Aug 2009 and have been involved in the study and USToo ever since. My initial numbers: 2 cores, 5% each Gleason 6 (3+3). For the longest time my PSA was at 3.0. Since being diagnosed it has oscillated between 3.5 and 4.0, most recent around 3.5. From what I have learned the PSA can be affected by anything that agitates the prostate. Such as sex a day or two before or physical activity such as exercising or bike riding or a DRE just before the blood draw. I have heard of a couple of cases in which the Dr sent a patient for the blood draw after the exam. Also PSA does normally fluctuates. I have had 4 biopsies from 2008 to 2009 to diagnose and confirm diagnosis. The biopsies agreed very closely so I feel confident with my numbers. Biopsies are not without risk. One thing my Urologists (I have been through a few and 2nd opinions until I found a comfortable place) did not tell me was the chance of blood infection. There is about a 1% or less chance of a serious blood infection developing from a biopsy. I ended up with a 5 day stay in the hospital due to some little ecoli buggers hitching a ride on the needle. Not a fun time. I did do the prep work as required, 2 course anitbiotics etc. As I understand there was a second cohort in the study that had the same experience. In addition there has been some discussion of the possibility of the biopsy causing injury to the nerves that run through the prostate. Because of these concerns, the study protocol has been changed from a biopsy annually to every 2 years. In addition in my case they will most probably do a biopsy only if something changes that warrants it such as dramatic rise in PSA. Obviously biopsies can provide valuable information, however each person needs to balance the expected result and reason with the possible risks.
Glen, in answer to your post, there are some good resources out there that you may want to use. If you have not already found it, look for the Prostate Cancer Research Institute web site. On the main page follow the resources link, then online discussion groups. You will find several email lists for different concerns within PCa (new diagnosed, radiation, surgery, WW etc). You can post questions and concerns there and should get some responses. There are also other resources on that site. If I had your numbers and results, I doubt seriously if I would be considering AS. The Pivot study released last July, while encouraging, does seem to draw a line at PSA of 10. You have had a significant increase in just a month. There are several factors that can affect PSA. PSA’s can normally very from time to time (though that is quite a varience). My course of action, not knowing all about your situation, would be to get another PSA to validate the results, then move forward based on the results, most probably with treatment. Just some information to think about. These are my thoughts, I am not a medical professional. Good luck going forward.
I was diagnose with prostate cancer on 11 September 2012 at the age of 57, stage T1C with a Gleason score of 6 (3-3) with no prostate cancer symptoms. That would seem like watchful waiting would be the best choice but my prostate specific antigen (PSA) on 24 May 2012 was 8.54, tested again my PSA on 4 Jun 2012 was 13.62. I had eight cores out of 12 positive with cancer from my biopsy ranging from 10% to 70%. I was told my prostate size is 28 CC. Now I am thinking of going through RapidArc External Beam Radiation Therapy or Cyberknife External Beam Radiation Therapy. Anyone have any suggestions.
Has anyone looked into HIFU? and has anyone had it done, My Dr. went with a patient to montreal and said so far ( a year) the treatment has worked.
@larry … the video was very informative. Thank you.
Just to correct a statement in Elton’s recent post: an increase of 1.0 in psa in a year is most definitely NOT an indication of aggressive cancer and I doubt that anybody at Johns Hopkins said this. Even those who fully support psa testing never make such statements, because there are so many completely benign explanations for a rise in psa. Elton, you may have misunderstood what a physician told you, but a statement like this serves only to scare some men needlessly. The unreliability of the psa test is the reason the US Preventive Disease Tas Force has recommended that otherwise healthy men not bother with psa testing.
Interesting You-Tube video with Dr Kellogg of UC San Diego. Discusses “Active Surveillance” among other treatments & general PC information. Link: http://www.youtube.com/watch?v=m22vx-kSIWY
@MikeM You are on the right track about Beam or Seed. Those are the BEST OPTION for you at your current stage in life. Please research all the information concerning the two. I agree with you on the surgery part regarding the quality of life. Remember you gonna have to do something because your situation is growing too fast. I have PC too at GS 6. According to the hospital John Hopkins, if you PSA go up 1.0 or more per year, you have fast growth cancer. I see that yours went up 1.8 on average each year. Mine go up 0.6 on average each year. According to them, they recommend me doing nothing (watch/wait). ONLY you can decide what best for you.
just had the biopsy two weeks ago and got the results today Gleason 7 Age 62 very healthy, PSA went from 2.7 to 4.5 in a 1.5 years. I radically changed my diet to only vegetables and fish and added the following supplements as the group recommends (Ultra Natural Prostrate 1 or 2 a day ?? Super Bio-Curcummin (400mg) and Resveratrol. It appears that wait and see may not be the best option for Gleason 7 . For me removal is not an option, poor quality of life. Radiation either bean or seed might be an option but they are not giving me a straight answer on how sick I would get from beam radiation. Seed Radiation I just do not know enough about the pros and cons. I would appreciate and comments from the forum, as I am new to the game.
Hi everyone. My father died from PC at 72 yrs. My younger brother is 49yrs old and has just been told his PSA is 4.9 with an enlarged Prostrate on a DRE. MRI to come. Looking at the general view, it seems that the “no treatment” option is just as valid as medical interventions. This is pretty much the case with other cancers too. I am now on alert myself (I’m 50 yrs old with 2 young kids). I appreciate the information and views. Regards, Nick
I stumbled across this website during my PC research. I’ve just been diagnosed with PC (GS of 6). Two of the twelved sites were positive for PC. I have not attempted to get a second opinion. I’m a distance runner in my early 60s, a nonsmoker and a nondrinker from birth. I was looking forward to retirement and running until I got this diagnosis. I’ve never taken any drugs so my natural inclination is to stay far away from them. My research thus far seems to support my decision. My concern centers around this site’s recommended PC suppliments. In addition to their bioavailability, I’m concerned about their interaction when taken together. I’ve not found any information to shed light on how these suppliments interact together inside the body. My approach will be to start with one suppliment (curcumin) and add another suppliment as I gage my body’s reaction. I read Alan’s comments regarding BM95 and was hoping find out where to purchase it provided the trials have been successfully completed.
Thank you for your website. I need your help. My father is a 78 male who recently developed urinary retention. His BP went up to 209/114 & HR 124. As soon as a foley catheter was inserted, 600 cc of urine was drained. BP went to normal 120/78 and HR 80. Prostate Exam: Hard. PSA 9.9. Gleason Score 6. The urologist has attempted x3 to remove catheter, but my father failed x 3 as he could not urinate and indwelling catheter remained in place. Urine is clear with no foul odor. The urologist does not recommend surgery, however, because my father cannot urinate, he recommends radiation. In the meantime, his diet consists of fruits & vegetables, Esiac Tea, apricot seeds, lots of herbal formulas, & supplements. Again, he cannot urinate & needs the catheter. What would you do? Thank you,
Dinene, I have no evidence that repeated biopsies will result in a jump in PSA score on any permanent basis. A biopsy would surely increase psa in the weeks afterwards but there would be no logical reason to have a PSA test soon after a biopsy.
Hi Michael, Appreciate your research and outreach you provide on this website. My husband was diagnosed in 2007 at age 51 with gleason score 6, a PSA of 4.5, and slow growing cancer in 1 sample. Second biopsy in 2008 showed 1/2mm more cancer in another area. PSA continued to creep up. By End of 2009 it was 5.74 a biopsy showed no cancer though. By the end of 2010 PSA was 6.86 and another biopsy showed no cancer. By late last year the PSA was 8 the doctor recommended waiting since last two biopsies were clear. This week June 2012, his PSA is up to 11. The doc wants to check again in a few weeks, and do another biopsy if it\’s still that high. I\’m guessing his prostate could have increased in size although he doesn\’t have any symptoms of BPH. He has a very good diet, is in the best shape he\’s ever been in, and has an amazing, non-worrying attitude about all this. I guess I\’m reaching out because I read your story and that your PSA jumped up from 7 to 11 due to an increase in prostate size. I\’m hoping that is what is happening with us, but he doesn\’t have any signs of BPH or Prostatitis. In your research, have you found that frequent biopsies can themselves cause a higher PSA? I know that can happen shortly after the biopsy but it\’s been 1 1/2 years since his last one and PSA is still going up (even though no cancer detected last time).
Michael, the “study” you refer to is not a study, but an Expert Opinion by Slater, Dumas & Bubley and no doubt is based on studies carried out over the last decade that are well known to those who have followed the 5-alpha reductose inhibitor (finasteride and dutasteride) debate over recent years. The article you cite introduces no new material and no new or recent study. I have read as much about this topic as I can and stand by my comments below (dated 18th June).
Michael, is the new data that your doctor has that Proscar and Avodart “does not fight cancer and may induce more aggressive disease” just the same story that has been floating around for almost 10 years, or is it something really new this year ? The Prostate Cancer Prevention Trial and REDUCE Trial both identified a lower rate of positive biopsies for those treated with a 5 alpha-reductase inhibitors, and quoting from the REDUCE Study Group the major effect of dutasteride is the shrinkage of prostate tumors or inhibition of their growth. However, both trials did show a higher number of higher grade cancers, especially in later years of the trials. There are many researchers who believe that the incidence of higher grade cancers is due to one or a combination of factors including biopsy sampling density bias, grading bias and the effect of more men in the placebo groups leaving the trials with their higher rate of diagnosed cancer. As for grading bias, quoting Civantos et al finasteride may induce some foci of lower grade cancer to resemble higher grade cancer Â?and David G Bostwick states finasteride treatment is likely to overestimate the biologic potential of high grade cancer Â?. If you believe Dr. Patrick Walsh, Avodart does cause higher grade cancers and has no redeeming features. He was able to convince the FDA in the USA that dutasteride was not a valid cancer treatment. At the other end of the scale, Mark Scholz thinks that finasteride and Avodart are useful to treat prostate cancer after it has been diagnosed Â?. I think that the benefits of Avodart greatly outweigh the low possibility of a future higher grade cancer. I have been on Active surveillance for 5 years and have a very large prostate. To help with this I have been taking Avodart for 17 months and recently changed over to Duodart, which is a duotherapy of Avodart combined with tamsulosin. If I can benefit from Avodart, the threat of higher grade cancer is not an adequate reason to be dissuaded.
Michael, Since you helped me by e-mailing me back on the vitamins/supplements listed on your webpage, I’m going to return the favor by sharing some of the research I did on them in the hopes of helping you keep your cancer and PSA in check. Currently, unless I am mistaken, we both take Saw Palmetto, Nettle Root, Lycopene, and Beta Sitosterol (as part of the Ultra Natural Prostate supplement), as well as pomegranate, green tea and vitamin D. Unlike you, I was also taking Fish Oil supplements, but as I will explain below, that is no longer the case. Therefore, my research focused on potential vitamins, supplements and foods that I was not taking, namely Silymarin, Curcumin, Modified Citrus Pectin (PectaSol-C), Resveratrol, Soy, and Cruciferous Vegetables. I stopped taking Fish Oil because there have been at least three studies that have linked fish (not fish oil) to aggressive PCa. While this could be attributed to PCBs, Mercury, Dioxins, etc. found in the fish supply, I figured why take that chance when there are other supplements that I could take in place of it. I also dismissed Resveratrol because studies have shown that it can both inhibit and promote the growth of PCa cells, depending upon the length of time the cells are exposed to it. Lastly, I decided not to take Modified Citrus Pectin (PectaSol-C) simply because a 30 day supply costs about $75 and I figured I could find less expensive things that could do an equally good job. Those things are 1) Silymarin/Silibinin/Isosilybin B & A and 2) Curcumin (personally, I have chosen 400 mg of BCM 95 Curcumin because it is supposed to absorb up to seven times better and remain in the bloodstream twice as long as conventional Curcumin). Curcumin has the added benefit of working well in combination with Soy and Cruciferous Vegetables. In the case of Soy, a randomized, blinded, placebo-controlled study showed that treatment of PCa cells with Soy Isoflavones and Curcumin resulted in a SIGNIFICANT reduction of PSA. In another study, Curcumin and Cruciferous Vegetables taken together were shown to SIGNIFICANTLY reduce tumor growth. In researching Silymarin, I found out that Isosilybin B is a key component in the supplement ™s effectiveness, and yet there is no more than 5% of this ingredient in Silymarin and it is absent from Silibinin. One of its benefits can be seen in this quote: “While the scientists reported some anti-cancer activity among other Milk Thistle constituents, it was necessary to apply those compounds at much higher concentrations to achieve the anti-cancer effect elicited by a relatively small dose of Isoliybin B.” Also, Isosilybin B & A have been shown to reduce PSA secretions while other Milk Thistle constituents do not show this activity. In closing, I am attaching my research notes on these two supplements and PectaSol-C (just in case you don’t mind the expense) so that you can go over the additional data if you care to. Also, I did research on the following drugs: 1) Avodart 2) NSAIDs 3) Calcitriol 4) Celebrex and Lipitor 5) Metformin 6) Dostinex and 7) Terazosin & Prazosin (which are both older BPH drugs that have been shown to induce PCa cell apoptosis). I, personally, have decided to go with supplements over drugs, but if you would like me to e-mail my research notes on these, let me know. Up front I will say that numbers 1, 2, 3, and 6 above all have some sort of negative press associated with them (and I’m not talking about the list of common side effects typically associated with taking drugs). I hope this information has helped. Good luck!
Here is one of the studies cited by my doctor in advising me against continue use of Avodart. Expert Opin Drug Saf. 2012 Mar11(2):325-30. Epub 2012 Feb 8. Dutasteride for the treatment of prostate-related conditions. Slater S, Dumas C, Bubley G. Source Beth Israel Deaconess Medical Center, Harvard Medical School, Division of Hematology/Oncology, Boston, MA, USA. Abstract INTRODUCTION: A variety of pharmaceuticals have been developed directed at mitigating the symptoms associated with benign prostatic hypertrophy (BPH) and have also been evaluated for their potential role in prevention and treatment of prostate cancer. One such agent is dutasteride , a non-selective inhibitor of 5α-reductase, an enzyme responsible for conversion of testosterone to a more potent androgen dihydrotestosterone (DHT). AREAS COVERED: This review will cover the safety profile of dutasteride when it is used in the treatment of prostate-related conditions, specifically looking at the pivotal clinical trials on this drug. EXPERT OPINION: Dutasteride has proved to be a safe and efficacious treatment for symptoms related to BPH. The primary safety concern relates to the increased incidence of high-grade prostate cancer seen in men treated with dutasteride in the setting of prostate cancer prevention. Dutasteride has a role as an adjunct in the treatment of prostate cancer however, this is an area still under active investigation. It is not recommended for use in prostate cancer prevention given the increased risk of high-grade cancers.
To all: I have been on either Proscar or Avodart for the last several years to reduce the size of my prostate and reduce BPH symptoms. I had also believed that Avodart could help kill cancer cells. My doctor has now advised me to stop taking it, in that there is new data showing it does not fight cancer and may induce more aggressive disease. This latter point was known in studies of men who had not been diagnosed. So I am now off it. My PSA will begin to rise and next time I get a test it will probably double. My BPH symptoms were not that bad to risk taking the drug based on the newest evidence.
I just had a biopsy performed on my prostate. Six cores were taken four were positive and two were negative. At the consultation for results my urologist gave me three options de Vinci surgery, seeding, or radiation treatment. There has never been a case of prostate cancer in my family, I have researched this. I lead a very healthy life and at 69 appear to be in my early fifties. I am never sick, do not smoke, do not drink to excess, and still hold a physically demanding full time job. The more I read the less I am inclined to have any treatment except monitoring of the condition. Doctor all so said that my prostate was not abnormally enlarged. Looks as if I need another opinion. Also my Urologist wants an answer to my decision in two weeks. Not!
Donald, I would need to know a lot more such as percentage of cancer in each core, gleason score etc, but the four positive cores are somewhat troubling. You dont have to decide in two weeks though.
I am currently in Europe and have a psa level of 4.5. it was 3.5 a year and a half ago. I was wondering if anyone knows where I can get a Pro-PSA test in barcelona or and meditteranian port city. I believe they are using in here already and are awaiting FDA approval in the states.
Jim, Do you have an update concerning your situation? You said you had a GS of 6, stage 1? I am is same as you but I am 61. John Hopkins (the hospital) said if your PSA goes up 1.0 or less a year you have slow growth cancer. They recommend that I don’t nothing (AS) because they feel that I will die from something else and no PC. My PSA goes up 0.6 every year. You can have a PSA score of 5000.3> and still be good in good health. There have been a lot of men who have gotten surgery and didn’t need it. Mr. Buffet is one of them. He most likely would die of heart failure even with the cancer treatment that he getting. I feel for those men that gotten surgery or Chemo and they wasn’t in harm way with their PC. Their life are NOW worst off with the side effects.
Jim, with your stats, you are an ideal candidate for AS despite only being 53 years old. I say this because, according to the National Comprehensive Cancer Network (NCCN) and noted AS physicians like Dr. Charles Myers, Active Surveillance is all about curative intent. In fact, here is the definition of AS that is listed in the NCCN guidelines: “AS involves actively monitoring the course of disease with the expectation to intervene with curative intent if the cancer progresses” . In other words, you may one day need treatment if your cancer progresses (and if it doesn’t, you could conceivably be on AS indefinitely). The key, then, is to stay on top of the monitoring and, in that regard, I would recommend taking advantage of all of the tests that are available to you. For example, in addition to DREs and PSAs (including a check of your % free PSA, as well as your PSA Density & Velocity), there are two genetic tests known as PCa3 and ProstaVysion. Plus, there are the Color Doppler Ultrasound (CDU) and MRI scans. These two scans can be done along with a “targeted” biopsy which is more accurate than the results of the standard “hit or miss” TRUS biopsy that most men have. To learn more about AS, you can Google askdrmyers.wordpress.com/ and watch some of his videos. Lastly, I invite you to scroll down to a post that I listed on this forum on March 2nd, 2012 that deals with the subject of how to find a urologist or oncologist in your area that would be open to taking you on as an AS patient. Good luck!
Today the US Preventive Disease Task Force finalized their recommendation of no routine PSA screening, even for men over 50. They based their recommendation on studies that show either no mortality benefit from screening, or such a minor mortality benefit that it does not justify the invasive procedures that screening inevitably leads to. Predictably, urologists are damning the report but it is interesting that they never challenge the studies. It is sad that so many innocent men, trusting in physicians who are supposed to rely on science, have had their lives thrown into crisis for no good reason. At least the Task Force has the courage to rely on facts and not fear.
Lisa,I have the same circumstances as your husband,newly diagnosed this yearGleason 6,Stage 1,only one core sample was 10% cancer,PSA 5.3.I am 53 years old and 2 Urologists have told me the same thing that I’m too young for AS.I have had a couple of surgical consults but I am not ready for RP or Brachy.This is a tough road to go down!Does anyone know of a MDUrologist or Oncologist in the Minneapolis/St Paul area that would help me?
Lisa, Time for a second opinion preferably with an Oncologist – someone with no irons in the fire.
Great post. Great speech. Brawley’s whole speech is here http://www.youtube.com/watch?v=3ho_LMBiHVg. The part about prostate screening begins at around the 13 minute mark. Brawley is black himself and he compares PSA screening to the Tuskegee Experiments where blacks were lied to and intentionally exposed to syphilis. He implies blacks were inordinately harmed because black men were urged to get screened beginning at age 40. A pretty strong indictment. He goes on to say that the one study in 2010 showing PSA screening ‘might’ save lives was released at the same time as a study that showed it ‘increased’ your chances of dying! President Clinton apologized to the Tuskegee survivors. Who is going to apologize to us?
My husband was just diagnosed with stage 1, Gleason score 6. His Dr. says he is too young for watchful waiting (50yrs). What is your opinion and has anyone ever tried Dr. Burzynski in TX. I hear great things about his antineoplastons treatment.
When it comes down to assessing the risk of dying from PCa, I think that, rather than expressing that risk in terms of a ratio or a percentage of the population, it should be assessed by each individual patient, looking at his circumstances alone. For example, if a 50 year old man needs to decide if treatment is right for him now or in the future, IMO he would be far better off looking at his age, overall health & biopsy results rather than relying on seemingly low PCa mortality rates. In other words, instead of looking on the 3% mortality figure as a positive, it would be wiser of him to objectively look at his own circumstances and ask himself if he is just as likely to be one of the 3% who die of PCa as one of the 97% who die of something else. For example, if his circumstances are such that he is in good health (aside from having PCa), then at his age he can reasonably assume that he has almost 30 years of life expectancy left, and with that knowledge, he should take a good hard look at his biopsy results. If the results show a higher risk cancer, then he COULD very well end up being one of the 3% if he chooses to forego treatment in favor of doing nothing or following an AS strategy. The bottom line is that PCa does not fit into an easily defined mold as far as risk is concerned and it should not be viewed that way.
Ken, I Have stage, GS6. with 1 lobe being 5% cancerous. One year later, I have another “B” and the 5% had disappeared. The doctor wanted me to come back the following year for another “B” at $800 a pop. I did my research and find out that I have the slow growing type of cancer. According to John Hopkins (the Hospital) if your PS score goes up 1.0 a year or less, your have a slow growth cancer. Their position is to don nothing but continue living your life because they feel that it wouldd be something else that your would die from and NOT prostate cancer. With Mr. Buffett he can do whatever he wish. But personally, i think this is his way of making a donation to that Doctor or Hospital. With his stage 1, he is NOT in danger of dying from Prostate Cancer. He’s is most likely die from heart failure in the future. At this time, stage 1 Prostate Cancer is over treated like in Mr. Buffett case. But to each his own.
Listen to this speech by the head of the American Cancer Society. He explains how anyone who got a PSA test between 1990 and 2010 was lied to and why anyone who who got a PSA test since 2010 is an idiot if he had given his fully informed consent (i.e. namely, he was told PSA screening saves one life if 48 men are treated). One life saved … 48 ruined. Prostate cancer can be cured? OK … yeah, right … at what price? (And that’s based on only one single study! ) http://www.kaiserhealthnews.org/Stories/2012/May/02/otis-brawley-ahcj-american-cancer-society.aspx
Warren Buffet is a finance guy and listens to the advice of his doctors. Of course, he had MRI scans and Cat scans and whatever else scans to make sure it had not spread. When I was diagnosed with <1% of 1 core of 14 with prostate cancer gleason 6, I did not have all these scans. the urologist just said, see you in 1 year for another biopsy which really sucks. I had excessive bleeding and pain. But, the urologist really did not care when I mentioned this. He is just interested in the ka-ching (money). A few thousand dollars for a 10 minute biopsy.
Carla – I’m very sorry to hear of your father’s condition. Like Michael said, this isn’t the best site for hormone treatment questions. You may want to try the Healingwell forum: http://www.healingwell.com/community/default.aspx?f=35
@Carla I posted your question as a courtesy and in the hope that someone might be able to help. But, honestly, this is not the best site for you. Most of those who visit this site have early stage cancer and are not interested in being treated. Why not try prostatepointers.org?
Why on earth was Warren Buffett getting a PSA test at his age? And why is he going to undergo treatment? I wish he could find his way to this site.
In 2009 they found my fathers prostrate cancer it had spread to bones/lymph system and a tumor in his chest. His initial P S A count was over 2500. He chose hormone therapy and prayer. In 3 months (which is how long they said he\\’d live) his P S A count had dropped to .89, truly a miracle. Last April his count began rise again and in August 2011 (P S A count @ 7-8) he began the Provenge treatment. We knew his PSA could spike for a while after treatment, but it is now 45. Has anyone had this treatment and how did you respond, what did your PSA counts do? Thanks for any info you can give, our oncolo is being very evasive about this
On AS? Getting your regular biopsies to “monitor” your cancer? Read this. A new study released today: “Breast Cancer: Women With False Positive Mammograms at Higher Risk” :http://abcnews.go.com/Health/CancerPreventionAndTreatment/breast-cancer-women-false-positive-mammograms-higher-risk/story?id=16078223#.T352E9l618E In other words, women who have suspicious mammograms who are relieved when their biopsies show no cancer — END UP AT A GREATER RISK OF EVENTUALLY GETTING BREAST CANCER. The probable reason: the article states: “Surgery or needle biopsies may cause a local inflammatory or wound-healing reaction, which increases cancer risk,” ITS ONLY A MATTER OF TIME BEFORE SOMEONE DOES A SIMILAR STUDY SHOWING THAT PROSTATE BIOPSIES CAN ALSO STIMULATE PC PROGRESSION.
Here is a more useable link for the video logs: http://askdrmyers.wordpress.com
Anyone considering AS would benefit from watching some of the video logs by Dr. Myers. He is a strong proponent of AS for Gleason 6 patients. (I would suggest watching some of the previous videos as well as the current one.) http://askdrmyers.wordpress.com/?mkt_tok=3RkMMJWWfF9wsRonuqTJZKXonjHpfsXw7uUsT%2F%3Cstrong%3E%3C/strong%3Ern28M3109ad%2BrmPBy%2B2IYHWoEnZ9mMBAQZC81x0gNLDuGBeYZP6OBQ
First, this is a great website and glad i stumbled onto it. You see, 4 days I ago, I became a member of “watchful waiting” with a gleason score of 6. Although I had 2/12 cores positive with PC. My doctor did say it would have been better if it was 1/12 which i think i now understand. Mike\’s “My Story” was great and helped me as I start to venture down this path. Unfortunately for me, my brother has Stage 4 PC, mom died of lung cancer a year ago, and reportedly, my father had a bout of colon-rectual cancer. Frightening! Again thanks for the story and the website. I go into City of Hope for consultation on treatment options. U bet I will come and update for u all, follow club members -) It\’s a scary slope for us all. God Bless. ~”B”
Hi KC, since no one responded from the Gainesville, Florida area, I suggest that you Google healthgrades.com. If you click DIRECTLY on their website, (as opposed to “Find a Physician Â?) and type in Urology as a specialty and Gainesville, Florida as your location, you will find a listing of 41 Urologists in that area. Also, since an Oncologist specializing in prostate cancer might be an equally good choice to help you with your AS, you can type in prostate cancer as a specialty and find 63 Oncologists for you to choose from in the Gainesville area. Of course, these listings will not tell you which of the listed Urologists and Oncologists support AS. Therefore, I suggest that you call the offices of these doctors and be frank with them about the type of doctor you are looking for. I am confident that many, if not most, of the doctor ™s receptionists will be able to give you insight regarding the doctor’s position on AS. I say this because making these calls was the first step that I took to find the right Urologist and Oncologist for me. Once you have narrowed down your list of potential candidates, you can check out the patient surveys listed for each doctor on the healthgrades.com website to give you some insight as to whether or not they are caring and compassionate. Ultimately, though, the best way to judge whether they are the right doctor for you is by sitting down and talking with them. Good luck in your search.
I am interested in doing AS. Can anyone recommend a compassionate, caring urologist in the Ocala/Gainesville Florida area?
To Bill: You didn’t specifically say how many cores had cancer based upon the second biopsy results. If it is still just one core, then despite the increase in the percentage of cancer in the core, you still meet the AS criteria on most all websites. (Based upon a 12 core biopsy, the criteria I am referring to is cancer in no more than two cores and no more than 50% cancer in any one of those cores). The increase in the percentage of cancer MAY be due to progression, but it could also be the result of a change in needle placement from one biopsy to the next. Plus, it might be because your slides were analyzed by a different doctor or lab. If you have not already done so, I recommend that you send your biopsy slides out for a second opinion. Personally, my last biopsy results showed four cores out of twelve that were all 45% cancerous. When I got my second opinion results back, it still showed four cores, but two were only 5% cancerous, while the other two were 10% & 40% cancerous. So, you can see just how different the results can be. In regards to your PSA, the results can be affected by factors that are not cancer related. You did not say what your PSA was at the time of your original biopsy, but what I can say is that you should pay attention to your PSA changes over time. I would recommend that you read up on PSA velocity and doubling time, if you have not already done so. You should also have your PSA Density & % free PSA checked. Good luck.
In response to Ed’s invitation to read Dr. Vortsman’s article, I say: ABSOLUTELY! Read it because you will see that everything I wrote about it is TRUE. The only explanation for his invitation that I can think of is that he is counting on most of you not to read it all since it is 30 pages long. I did read all of it, however, & to remove all doubt about who is right, here are the page numbers to go along with my earlier statements: 1) The sentence that shows he has an agenda is on page 30, after the bibliography. 2) PSAs with informed consent is on page 3. 3) His support for biopsies, if warranted, after several PSA & % free PSA readings is on page 13. 4) His belief that biopsies do not spread cancer is on page 14. 5) His support for AS involving PSAs & biopsies to monitor for progression is on page 8, & the part about having a 24 core biopsy before starting AS is on page 14. 6) Finally, the part about when a further biopsy evaluation is warranted is on page 7 & 10. TO HOWIE: You might as well thank Ed for helping you make your AS decision because your practice of monitoring your cancer with PSAs after your biopsy is, by definition, AS. The irony is that Ed is opposed to AS. He believes that you should IGNORE your cancer until you need palliative treatment to ease your symptoms (& I should not have to tell you what having PC symptoms means).
I never said I agree with everything in that article. I have no doubt that Vortman has an agenda. This is for profit medicine at its best and he may be smart to be reaching out to a great untapped market of men who are now finding out that they have been lied to about pc for the past twenty years. The entire thrust of Vortman’s position is that there is no proven cure for prostate cancer and that minimally invasive treatments are better choices in those few cases where treatment is necessary. The real value of that article … that most men here will identify with … is its detailing of some of the medical weasel-wording concerning pc “cures” they may have heard from their own doctors. Of course, if I were able to speak to Vortman my question to him would be: Why diagnose if there is no cure? I believe that discussion would lead to his admission to me that his treatments were only palliative. The general public … his target audience … is not ready to hear or deal with that reality.
Hello Michael and anyone else who may read this, Almost 3 yrs ago I was diagnosed with a Gleason 6 in 15% of one out of 18 samples, in the left lobe. I just had another biopsy because my PSA spiked to 12. while taking Avodart for the past 18 months. My results were still a Gleason 6, but now in 40% of the left lobe samples. The right lobe remains negative. Now, of course, I’m being pressured into treatment. What’s your opinion on having an increase of PC volume after three years, but still a Gleason 6? I appreciate any feedback, Thank you, Bill
53 year old,I had a 10 needle biopsy a month ago,1 core was 10% Adenocarcinoma,gleason score =6. I saw my Urologist today,he was “very” concerned that I wanted to do AS and that I had canceled my surgical consult with one of his partners,ha! He suggested I do a 40 needle biopsy in the hospital if I wanted to take the AS route,I told him I would think about it but honestly I don’t think that is something I want to do at this point.My Urologist is retiring soon and I think I should get another opinion.I asked him if I should get a PSA test in 6 months and he shook his head and said no,I guess I will need to find another MD.I am going to keep the radiation consult and see what brachytherapy “seeds” is all about but at this point I am certain AS is what I am going to do.I wish I would not have seen him today because he seems to have the knack for scaring me!
Jim Your urologist is bordering on malpractice. And don’t have a 40-needle biopsy. You will regret it.
It doing research on the topic of psa tests, I have found innumerable causes cited for raised psa’s that have nothing to do with cancer, including: an enlarged prostate (normal in men over 50), urinary retention, bike riding, too much sex, not enough sex, weightlifting, passing infection of prostate or bladder, consuming coffee, other dietary influences (such as those cited by Howie), effects of medications, vigorous exercise, constipation, eating a heavy meal before the test, and the list goes on and on. All of these and more have been cited by urologists as possible causes of raised psa readings. A test that is this unreliable should not, in my view, be the basis for the countless procedures that are done to find the incredibly small percent of truly dangerous prostate cancers, especially when those procedures have not been shown to improve mortality. This is why the physician who discovered the psa antigen in the first place has said that it has led to a “public health nightmare.” It seems high time that the medical community should be required to inform patients of the unreliability of this test before men are innocently drawn into unnecessary treatment.
Small correction to my previous post: My PSA three months ago was 4.4, not 6.5 as I wrote yesterday. Still a big drop, from changing to healthier foods..GLTA.
No “fact checks” are needed. No biased interpretations are needed. Read the article and decide for yourself. No doctor in their right mind in America is going to advocate doing nothing for any cancer. Dr. Vortman clearly and forcefully reiterates that RP has never been proven to “cure” pc. Which is as simple a proven fact as any fact can be. As far as my personal “philosophy” … I would always advocate the lesser of two evils and in that regard if push came to shove, I would advise anyone to chose AS over RP. But on the other hand, WW is preferable to AS … and NK (Never Knowing) is preferable to them all. I have no idea, but Dr. Vortman may likely be in favor of “informed consent” for PSA testing in the same manner that I am … believing that anyone intelligently “informed” would never agree to the test. As for challenging this doctor’s “agenda,” this is a direct quote from the article: “The absence of long term curative life extension may also exist for the other definitive treatment modalities like the radiation options, hifu or cryoablation for localized prostate cancer” and “Currently, there is a total lack of evidence to support one treatment modality for localized prostate cancer over another. Therefore men should focus on treatment options that result in less complications and better quality of life.” Again as far as my personal “philosophy” is concerned … no fact checks are needed and no biased interpretations are needed. Read my posts and decide for yourself. I have never said that pc should never be treated. I have said there is no cure for pc and palliative treatment may be required.
Greetings to All: I was here last about 3 months ago. Had just been diagnosed with pc, 1 of 12 Gleason 6 <5 percent. I was advised to immediately see a radiation oncologist for seed implants, and my uro told me I could be “cured” . After freaking out, and then reading everything I could find, and after getting some great advice on this site (thanks to Ed, in particular) I met with 4 more urologists. 2 of them suggested AS, 1 told me to have my prostate removed, and 1 recommended AS with significant diet changes. Confronted my original uro with all that he had not told me he seemed genuinely puzzled. Won’t ever go back. Subbed soy milk for dairy milk in my morning latte, eliminated all butter, cream cheese, sour cream, etc. Cut red meat and eggs back to maybe once a week, no more. Doubled down on the cruciferous vegetables and apples, bananas, oranges. Started drinking a glass of pomegranate juice every day. Started watching FAT content in everything. Amped up my exercise routine. Went from about 168 pounds (I am 6’1′) to about 161 (I am 59 yrs old) Had another PSA test last Thursday, and got the results today. It was 3.0, down from 6.5 or so three months ago. Uro said keep it up, see you in 6 months, or a year if you prefer. It scares me to think what I almost did just because a doctor told me that’s what I should do. Never again. I will challenge them on everything. If they’re right, ok, but it will be because I satisfied myself that they are, not because they say so. Thanks and all the best to everyone here, and special thanks to you, Ed!
FACT CHECK. This website article: http://www.urologyweb.com/images/pcasurgery.pdf cited by Ed as being right up there with the best ever article on PC does not even come close to supporting his do absolutely nothing philosophy regarding ALL PC. (This philosophy believes in no testing, no AS & no treatment for any & all PC). The article written by Dr. Bert Vortsman is 30 pages long & can be accessed through the site. Here are some examples of how the article conflicts with Ed ™s philosophy: 1) While Dr. Vortsman hates RP, HE HAS HIS OWN AGENDA which is illustrated in this passage: Dr. Vortsman works to promote the acceptance & use of minimally invasive treatment options such as HIFU & cryoablation for localized PC in appropriately selected men…and has developed a Center for such options. (FACT: HIFU has one of the highest recurrence rates of all treatment options). 2) He believes in PSA, if there is informed consent, & biopsies, if warranted, after several PSA & % free PSA readings (& he does not believe biopsies spread cancer). 3) He also believes in AS involving PSAs & biopsies to monitor for progression, & thinks a 24 core biopsy should be performed on those considering it. 4) He even believes in further biopsy evaluation if the patient is in a less favorable risk category & the tumor is at the base or apex because he says that if the tumor volume is significant there, the threat exists that it is no longer organ-confined and that demands particular attention. In closing, it should be noted that NO study or author supports doing absolutely nothing about ALL cases of PC.
This is right up there with the best ever article on pc that I’ve cited here numerous times: http://www.urologyweb.com/images/pcasurgery.pdf
Jim, IMO, you should do a lot of individual research regarding Active Surveillance (AS) & treatment options before deciding what is best for you. Opinions (including my own) on forums such as this should serve to compliment your research, not replace it. Take your time. With your statistics, you should not feel that you need to rush into a decision. Also, I agree with Michael that you are an excellent candidate for Active Surveillance, but do not confuse AS with doing nothing. In the opinion of the vast majority, you are too young to ignore the disease. On AS, you would be monitoring the disease and deciding when or if treatment is necessary based on your test results. If you go this route, find a good doctor who will support your AS decision. However, If you decide on treatment, seek out only the top doctors in their field, even if you have to travel far to have the procedure done. Most websites will tell you that the doctor ™s experience & skill are essential elements in your long term prognosis. Stay in touch. I am sure the readers would like to know how you are doing and what you have decided on. Plus, your journey can benefit others the way that this site hopefully benefits you. P.S. If you decide on treatment, check out the YANA website. While this site is geared toward AS, YANA (YOU ARE NOT ALONE) has a wealth of information on all of your options. You will find a discussion forum there as well. Good luck!
Jim, Please do your research like I did. There has been alot of people with PC (but they wasn’t in harm way) who opt for surgery when it wasn’t necessary. You see Jim around 75% of PC is of the slow growing type that would not grow fast enough to kill a person in their lifetime. Most people with slowing PC would die from something else or doing something stupid like going boating without they lifejacket on and get throw from the boat and drown or die of a heart attach or something else.
Great to find this site. I was diagnosed with prostated cancer (Gleason 6, Stage 1) about nine months ago. My primary care doctor and urologist strongly recommended to have radical prostatectomy because I’m 53 years old and healthy and have 25+ years of life expectency. But I was scared and overwhelmed at the thought of cutting or burning my body with surgery or radiation to “treat” cancer. Harming my body and then having to live with that guilt for the rest of my life was more frightening than the cancer. I told them I just needed to calm down and absorb things at my own pace. Since then I have been reading and sifting through journal articles, reading cancer memoirs, and talking to people. Taking the time to settle and think is the biggest advantage of using AS. I am calmer and have a better understanding to ask questions if I eventually choose other treatment. It is easier to talk with people about cancer instead of reacting to the instinctive fear that surrounds the disease. My psychological health is much better without the rush to decide on a treatment. When I was first diagnosed, my primary doctor told me I had to decide on treatment in three weeks. Based on what I have read, much of what he said was hogwash and served only to stoke my fear. That still pisses me off, and I am looking for a new primary care doctor and urologist. The hardest part is not getting worked up about reactions from doctors, friends, or family who have been trained with the “war on cancer” mentality and insist that I have to “do” something, “do” it now, “do” it to calm their fears. As I take the time to calm down and learn more, it is easier to detach from their fearful reactions and explain that the monitoring protocol of AS _is_ doing something. I am choosing not to intentionally harm my body with unreliable and ineffective techniques that may not even prolong my life. I feel very good about _doing_ that for myself.
Jim, I can see no reason for you to get treatment at this time. Just go on active surveillance. You’ll get many years of continued sexual activity and continence.
Jim, I agree with Michael Las. WA/AS is the best course of action. The best action is to do NOTHING. I find that out the Hard way. I was getting PSA/DRE at $800 a pop yearly for 3 years for the doctor to tell me come back next year. MY GS is 6. It goes up 0.6 each. According the JHopkins psa go up 1.0 and less, they recommend doing nothing for the best quality of life. At 60 and feel fine. My last PSA came in at 7.0. My goes up 0.6 annually. Most cancer like you and I have, the doctors make money off you it you don’t educated yourself about PC.
The accident of finding this post has brgteienhd my day
Do you recommend I do PSA tests every 6 months or maybe yearly? My pathology report states Invasive Adenocarcinoma involving approx 10% of 1 in 6 cores.Gleason 6/10.
Jim, I get a PSA every 6 months
53 year old in Minneapolis,I just got my biopsy results today,1 out of 10 core samples was cancerous,Gleason score of 6. DRE\\\\’s have all been normal.My PSA was 4.3 in 2007,2008 and 2009,then in 2010 it was 4.5 and was referred to a Urologist,He did a PCA3 which was 8.3 (very low) then this year my PSA was 5.3 and I had a biopsy 2 weeks ago.He has referred me to 3 specialistsFirst is a surgeon for a Robotic prostatectomy consult,second is for a Radiation consult,third is for a Cryo consult.Does anyone know if trying alternative methods such as herbs,vitamins,diet etc is worth trying?
Alan, I have to respectfully disagree with you on your opinion that AS is not viable for those in good health with an expected life span of 10 years or more. I think AS is fine if you have Gleason 6 and a PSA of under 10 in nearly all cases.
Michael, if you go back and re-read my post, you will see that you read it wrong. I did not say that AS was not a viable option for those in good health with an expected life span of 10 years or more. What I said was that “doing nothing” was not considered a viable option under those circumstances. Those who have followed this site know that I am a proponent of AS and practice it myself. In light of your error, I would appreciate it if you posted this correction right away and not wait a week so that the readers know where I stand. Frankly, how you have mistakenly summarized my position makes me look bad.
Tom- Over what period was the rise and what is your age? All these things are factors.
Tom, I guess the question is whether a person is better off knowing about a cancer that will most likely never pose a mortality risk. Once you know you have even a low level of cancer, there is often pressure to “do” something, which often leads to procedures that can seriously diminish the quality of a person’s life. That is why the US Preventive Disease Task Force, after studying the issue for years, concluded that routine psa testing is not recommended. It leads to literally hundreds of thousands of invasive procedures every year with no mortality improvement for those who often start with a simple psa test, even if they have no unusual symptoms. In addition to the Task Force study, you might be interested in a study done by a Dr. Klotz, previously referenced on this blog, that reinforces the findings of the task force in terms of the overall lack of benefit of the invasive treatment regimens that are often recommended by urologists. Naturally, the urology community does not accept any of this and is convinced that they are saving lives. The studies do not back them up. Even a biopsy, advertised as a benign procedure, can cause serious inflammation of the prostate and inflammation has been implicated as an aggravating factor for existing cancers. The bottom line, in my view, is that the medical community is not always acting on sound science in how it deals with prostate cancer, often to the detriment of the patient. If you go back over the entries on this blog for the last three to four months you will find alot of useful information and discussion of these issues. Best of luck to you, however you choose to deal with your situation.
What is the doctor ™s responsibility as far as PSA testing is concerned? As Bruce said, the U.S. Preventive Services Task Force (USPSTF) has come out against automatically testing for PSA. Instead, they recommend that the doctor help his patient make an informed choice regarding the test by discussing the potential but uncertain benefits and the known harms of prostate cancer screening and treatment Â?. So, as more & more doctors follow these recommendations, many men opting to forego the test (like my brother) will not know what their PSA is and the doctor ™s responsibility ends with making sure his patient has made an informed choice. However, if the patient chooses the PSA test, any responsible doctor would inform the patient of the likelihood of cancer based upon his score, and make the patient aware of the importance of PSA screening every 4-6 months. @ Tom: In addition to knowing how long it took your PSA to rise from .7 to 1.3 and your age, it would be helpful to know the following: 1) the number of core samples taken during the biopsy. 2) the number of cores that were cancerous, and 3) the percentage of cancer in those cores. These are all factors that go into a decision to have treatment, or practice Active Surveillance (AS), or do nothing. IMO, and in the opinion of the majority, doing nothing should NOT be considered if you are in overall good health and can expect to live at least ten more years. Good luck.
Hey Paul, My PSA moved from .7 to 1.3 biopsy revealed Cancer Gleason 6, no PSA no idea I Had Cancer
What about Dr. Ronald Wheeler in Sarasota, FL : http://www.mrisusa.com
Has anyone found a good integrative/alternative doctor to work with while on AS?
The latest significant news bolsters the contention that the whole psa screening regimen does not save lives. The report in the Journal of the National Cancer Institute on 1/6/12 adds evidence to the findings used by the U.S. Preventive Services Task Force, which concluded late last year that psa screening has not worked and, in fact, has led to countless unecessary procedures that have harmed many men and diminished their quality of life. The new evidence extends the follow-up period from 10 to 13 years. Still no improvement in mortality among the screened and unscreened. How much more evidence is going to be required before this whole psa screening fiasco is put to a stop? Alan, on your posting in which you question Ed’s take on mortality of those with Gleason 8 to 10 who had RP, there is no right or wrong here because there is no control group of Gleason 8 to 10 who did not have RP. However, I was surprised that 60% of those individuals who did have RP did not survive ten years. The unanswerable question is how well a control group would do without RP. I personally suspect 40% would survive the 10 years. No way to know for sure, of course.
Those studies cited in support of the no treatment for all PC philosophy have not stood up to fact checking because no study supports that position, and that is why the ones citing the studies leave out things that do not help their case. The most recent study cited on 12/18 with the web address http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2239297/ is another case in point. What you need to know about this study up front is that the reported 39% of men with a Gleason score of 8 to 10 (hi-grade pc) that were cancer free at 10 years is based upon BIOPSY results. The person citing the study considers this to be a negative statistic and fails to mention that the study authors disagree. They have this to say: Patients presenting with Gleason score 8 to 10 PC on biopsy should still be considered for RP because their overall freedom from biochemical recurrence is 39% 10 years after surgery alone. For a full 45% of these men, the Gleason score was downgraded to 7 AFTER RP and that raised their 10 year cancer free rate to 56%….and for some patients, the news was even better. If a patient had clinical stage T1c cancer with a BIOPSY Gleason score of 8, there was a 64% chance that their cancer would be downgraded and these patients did best with a 10 year cancer free rate that was also 64%. In regards to these statistics, the study authors are quoted as saying: These results demonstrate that select patients with high risk cancer do well with surgery alone and they should be considered candidates for RP. Patients, especially those with clinical stage T1c and Gleason score 8 cancers, should be counseled that there is a distinct probability that the final histological grade will be lower.
David, We may be heading towards the day when treatment for any grade pc is NOT recommended. When you just look at RP surgery for “poorly differentiated” pc alone … the risk of recurrence after 10 years is a dismal 61%: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2239297/ . 60% are not cured! And that % will only increase as more time passes. And again … and again … I say we don’t know what would happen if these men were never treated — because once biopsied, if a hi-grade pc is found, all are treated and there aren’t any watchful waiters around to do a decent study. Had these men been left alone, and never had an inflammatory, blood disseminating pc biopsy … let alone inflammatory blood disseminating surgery … and the survival statistics might show zero difference between treatment and doing nothing. There is even the possibility that because there may be a much greater danger of biopsy and surgical dissemination of pc cells in hi-grade disease those DOING NOTHING MIGHT FARE MUCH BETTER! Offering treatment for hi-grade pc has been fallaciously based upon the “success” of treating low grade pc. A famous epidemiologist many years ago said “randomize the first patient” if you want to prove a treatment modality. That has simply never been done for hi-grade pc.
So, a surprisingly high percentage of men originally diagnosed as a Gleason 6 turn out to be a 7, and some have even had their PC escape the capsule…..and yet, you cannot know for sure if you are a true Gleason 6. Still, you can improve your odds. Some things you should do are well established, like making dietary & lifestyle changes and meeting the usual criteria for AS (which can vary somewhat on the different websites). My experience is somewhat different. I was on the brink of surgery, but recently my Urologist & I decided I should continue on AS and here is why: I personally did not do well on my last biopsy (4 of 12 cores that were all 45% cancerous). While I did meet most of the AS criteria, those biopsy figures failed to meet the guidelines on many sites. Plus, my PSA results (which is a criteria found on all sites) have been consistently below normal for a man with PC, averaging 1.5. I have read that for 25% of patients, PSA is not a reliable indicator and I seemed to fall into that category. My other PSA related results (Velocity, Density & % Free PSA) were all good, but I was unsure of how much weight to give to them since they are related to my abnormally low PSA score. So, my solution was to seek out other available tests that would hopefully shed greater light on my condition. Of course, there were DREs, but I also submitted to a PCa3 and a ProstaVysion test. The results of these three tests were favorable for the most part (the ProstaVysion results were not ideal, but they were still good enough). More importantly, as a whole, other than the biopsy, all seven of my test results have been good. I would not put stock in any one of these positive results standing alone. Nor, would I have a positive outlook if only some test results were favorable, but the fact is that they ALL were and that was good enough for me & the doctor. Lastly, some of these tests have been criticized on this site based on the conjecture that they can cause metastases some 15 to 20 years down the road, but even the critics admit that the chances are small. You probably have a better chance of getting killed in your car and that does not keep you up at night. So, why should that small chance. I personally would rather have a test give me insight into the aggressiveness of my cancer now and not worry about such remote possibilities. In that light, if someone knows of a test I have not spoken of, I would appreciate hearing about it. As far as I am concerned, the more insight I have, the better off I will be. Happy Holidays!
An interesting post on the prostatepointers web site from Roger Schaaf following government’s active surveillance conference (report posted in “Studies” section of my site): Possibly what is occurring is that many in the PCa medical community are beginning to recognize that extensive and intrusive treatment of this disease is saving very few if any lives. And those that are saved come at a very high price in QOL for those who are treated either unnecessaryly (my new word) or treating who in spite of the full monte of treatment(s) still die from the disease. As Ballentine Carter of Johns Hopkins (a compatriot of Patrick Walsh) is quoted to saying: “300 men over the age of 65 must be treated to save a single life at 10 years. Some 15 years ago, Dr. Stamey of Stanford suggested that this disease, especially with the advent of PSA screening was the most over diagnosed and treated disease in the country. For some 4 years in a row, beginning in 1986 I attended the PCRI Conference in LA. For the first 2 of those years, nary a word was mentioned by Presenters of WW or AS. By the third year ist managed to be spoken of in hushed tones by some of them. The final year that I attended was 2009, it seemed to be on the agendas of all Presenters. Perhaps realty is beginning to catch up with the business of PCa.,,,,to coin a phrase from the book “The Big Scare,,,the business of Prostate Cancer. This book along with “Invasion of the Prostate Snatchers by Dr. Scholz) should be read by everyone newly diagnosed(and all others) with this disease before any decisions are made. I myself was diagnosed over 6 years ago with a Gleason score of 4 plus 5 by Kaiser,,,confirmed by Stanford,,,PSA of 5.5, negative DRE. I declined all treatments,,,,subsequently when I exited Kaiser and went straight Medicare with a supplemental, I did send my biopsy off to Bostwick where they suggested a 4 plus 3,,,,subsequently confirmed by UCSF. I did visit Loma Linda,,,saw by Dr. Rossi regarding Proton Beam, stopped by Stanford a few times, had several MRSI’s at UCSF,,,Gadolinium and Pyruvate studies and color dopplers and when all was said and done and after very extensive reading and research chose the path that I currently on. Now 6 years later, I am doing well and intend to forgo any treatment until I see the “whites of its eyes” ,,,,hoping and trusting that I will be one of those 5 out of 6 diagnosed with the disease who will never die from a PCa specific death,,,,and live a very high QOL, and of course believing that there are treatments forthcoming (Abiraterone and MDV 3100 are recent examples) that will save the day for me if I should ever by one of those unfortunate 1 out of 7. And not be one of those treated extensively with a severely compromised QOL for my few remaining years,,,,I am now 71, or worse yet be treated to the Full Monte of treatments from RP to RT to ADT to Chemo,,,,etc. and still die from the disease (32,000 men die in this country each year,,,,results may vary as posted numbers are all over the place) and the vast majority of those who do die a PCa specific death did submit to and experience the full quiver of medical treatments to no avail. I am always reminded when discussing this disease and the assembly line that men find themselves on when first diagnosed, of the old Kingston Trio song “MTA” . Charlie boarded that train in Boston, had not a nickel to pay his toll to get off the train, and was forced to ride this train forever and never to return. Did he ever return, No he never returned And his fate is still unlearn’d He may ride forever ‘neath the streets of Boston He’s the man who never returned I have no idea what Dr. Myers motives are (even though I sat next to him at a dinner 2 weeks ago and spoke to him extensively) but I think that he is suggesting that G 6’s are not worth wasting time, money and QOL on,,,,and I suspect that he is beginning to believe that perhaps local intrusive RT’s and RP’s are not saving many lives for higher grade cancers either,,,,although he remains in the firmly in the systemic treatment camp for advanced disease and perhaps RT for focalized metastatic tumors if the total identified is under a count of 5. This is only my opinion of what I think he is suggesting,,,,I do not wish to put words in his mouth,,,,although it is well known that there are Physicians who specialize in this disease who are beginning to suggest that G6’s are not fully worthy of being called cancer. When does the ground war begin? Roger Schaaf
I just checked out the Ask Dr. Myers website cited by David L. in making his case for no treatment if you are a TRUE Gleason 6, regardless of age. The first thing I saw on the site was this: Dr. Myers – AS most appropriate choice for MOST Gleason 6 patients. The problem is that you cannot be sure that you are a TRUE Gleason 6. Dr. John Libertino of Lahey Clinic told me that a published study of 4000 men who had their prostates removed revealed that 42% diagnosed as a Gleason 6 before surgery were actually found to be a Gleason 7. In the forum section of the above mentioned website, 2 out of the most recent 25 people posting (namely The Water Guy & English Alf) have experience with not only finding a Gleason 6 to be a 7, but also finding that the PC had escaped the capsule. So, IMO the position of those who believe in no testing or treatment in MOST cases (like the USPSTF) is valid. On the other hand, the position of those who believe in no testing or treatment in ALL cases is NOT valid due to their inflexible point of view. (I am unaware of ANY study that has come out in favor of no treatment under all circumstances). I do not understand why, on this site, this distinction is so hard for some to grasp. I would think that the answer as to whose position is valid and whose is not would be obvious. Also, this is a good example of why studies cited to make a case should be checked for factual accuracy and completeness.
Ed, my father had longstanding heart problems and died in surgery for a broken hip. Also, this study came out this week: New study reassures on heart risks of prostate cancer treatment Study finds no evidence that androgen deprivation therapy causes heart attacks BOSTON â€?Hormone-blocking therapy for prostate cancer doesn ™t raise the risk of fatal heart attacks â€œ as some recent studies had suggested â€œ according to a new report from Dana-Farber/Brigham and Women ™s Cancer Center. For men with high-risk prostate tumors, a combination of local treatment and drugs that block male hormones that feed prostate tumors can significantly lengthen survival. In the past few years, however, the U.S. Food and Drug Administration and some professional organizations have raised a caution flag about this treatment regimen, citing a few studies that linked androgen deprivation therapy (ADT) to a higher risk of heart attacks. But those fears appear unwarranted â€œ at least for men without a history of heart disease â€œ according the Dana-Farber/Brigham study that is being published in the Dec. 7 issue of the Journal of the American Medical Association. Led by Paul Nguyen, MD, and Toni Choueiri, MD, the scientists performed a meta-analysis of randomized studies involving 4,141 prostate cancer patients. The analysis found no difference in the rate of cardiovascular deaths in men receiving ADT compared with those who didn ™t. The study couldn ™t rule out that ADT might elevate the risk of fatal heart attacks in patients with a history of heart disease the investigators said they plan to look more closely at that population. This message should be reassuring for the vast majority of patients considering androgen deprivation therapy, Â? said Nguyen, a radiation oncologist at Dana-Farber/Brigham. If you need ADT for your prostate cancer, go ahead and have it. Hormones can save lives. Â?
OK study picking to “prove” your point. First of this was NOT a study of elderly patients. Sorry but you seem to have a big problem interpreting studies. Using a study that shows no higher risk in men of all ages to extrapolate this study to elderly men is simply faulty thinking. Its similar to using the “success” of RP treatment for Gleason 6 to to support treating higher Gleason pc with surgery. MANY MEN ON ADT ARE YOUNG. YES IT MAY EXTEND SURVIVAL IN YOUNGER MEN WITH TRUE SERIOUS PC. THESE YOUNGER MEN DON’T OFTEN HAVE HEART DISEASE. THOSE MEN ARE SKEWING THIS STUDY IN FAVOR OF THE DESIRED CONCLUSIONS OF THE AUTHORS. HEART DISEASE PREVALENCE IS HIGHLY CORRELATED WITH AGE. I CHALLENGE YOU AS A MEDICAL WRITER TO GO TO THESE STUDY AUTHORS AND ASK THEM TO SEGREGATE OUT THE ELDERLY PATIENTS IN THIS STUDY AND RELEASE THE RESULTS SEPARATELY.
Ed, I’m not trying to prove a point. Just citing a study that came to my attention this week cause it seemed relevant to the subject. Yes, I know it is just one study.
If you have a true Gleason 6, surgery is NOT recommended, regardless of your age. This is based on new studies, presented by Dr. Myers at http://askdrmyers.wordpress.com/2011/12/07/is-rp-dangerous-for-localized-pca/
Michael these are quotes from USA Today 12/8/2011. WHERE HAVE YOU HEARD THESE EXACT SAME THINGS BEFORE? “Those low-risk prostate cancers probably shouldn’t even be called cancer, the panelists wrote. “Because of the very favorable prognosis of low-risk prostate cancer, strong consideration should be given to removing the anxiety-provoking term ‘cancer’ for this condition,” they said.” ( I SUGGESTED “ARPD” or “age related prostate degeneration.” many years ago ) THEY GO ON TO SAY THIS ABOUT AS : “One problem, the panelists say, is that there haven’t been studies to determine the best way to follow men who opt for active surveillance. “Predicting whether a particular individual’s cancer will progress is difficult,” the authors acknowledge. Perhaps, they write, there are alternatives to performing repeat biopsies, which themselves can cause complications. “Active surveillance is underutilized as a treatment strategy for men with low-risk prostate cancer for reasons that are not fully understood,” the panelists write.” AND ABOUT UNNECESSARY TREATMENT: “In this culture, to live with untreated cancer is no mean feat. The message in this country has been received loud and clear, that early detection and early treatment is what you do for cancer.” WHERE IS THE OUTRAGE ????????????????????? I KNEW THIS 10 YEARS AGO!!!!!!!!!!!!!!!!!! HOW MANY MEN HAVE BEEN KILLED AND HURT BECAUSE OF THIS PROFIT DRIVEN DISASTER?
Re: Michael’s father’s heart attack after androgen suppression therapy, from today’s news: http://www.forbes.com/sites/larryhusten/2011/12/07/cv-risk-of-prostate-cancer-therapy-underappreciated/ More UNPROVEN treatment with significant side effects.
The long-accepted philosophy ?The needs of the many outweigh the needs of the few …or the one? (which most people know from ?Star Trek II: The Wrath of Khan?) is the justification for treatment in the John Hopkins study posted & commented on earlier which showed that 29% of men that underwent RP had a recurrence of their cancer. Even when you liberally add to that percentage as a result of the ?ancillary factors? (deaths on the operating table & from infection, mistakes, suicides, etc.), it doesn?t change the fact that, in this study, 71% were very much alive 20 years later with no detectable cancer. So, in other words, 29% (the few) had to experience unsuccessful RP & its side effects so that 71% (the many) could be cancer free after a full 20 years following the operation. Of course, that means the 71% did not die of any of the ancillary factors either. (Note: this study involved thousands of men, a full 500 of which were diagnosed in the pre-PSA era). Therefore, the statement ?We’re now in the territory where treatment may be killing more people than it is saving.? is completely unsubstantiated. This same philosophy can also be seen in the USPSTF Recommendation against widespread screening. In this case, again, the needs of the many (those for whom testing will do more harm than good) outweigh the needs of the few (those who would benefit from early detection because an aggressive cancer was caught early).
I don’t remember being loaded up with sugar for my endorectal MRIs, but maybe I missed something?
I have a question about foods to avoid. When I had my endorectal MRI, they didn’t inject me with dairy products or red meat extract, they loaded me up with SUGAR to find those cancer cells. It seems to me all of us on Active Surveillance should be avoiding SUGAR and all the other high glycemic foods that spike the insulin so necessary for cancer growth and progression.
Murray’s doctor says: ” that if biopsies were causing cancer progression, the results would be readily apparent.” How utterly ridiculous! Really! Readily “apparent.” The time lag between a biopsy and metastatic pc can be as long as 15 to 20 years! “Apparent” to who? So did you ask him for the long term study comparing pc deaths for men who have had a biopsy and men who haven’t? Sorry, but there aren’t any — more m.d. BS — like that Michael’s oncologist talking about no increase in pc cells circulating in the bloodstream after biopsies. This “expert” goes on to say that “there is no apparent difference in cancer progression in those who receive biopsies than those who didn’t.” REALLY! How even more utterly ridiculous! (and there’s that word “apparent” again!) But really, how great! YOU MEAN THERE’s BEEN A WAY TO DIAGNOSE PC WITHOUT A SINGLE BIOPSY? AND THEN TO MONITOR PC PROGRESSION WITHOUT MORE BIOPSIES! Well then why isn’t this guy telling anyone about it!
Just visited with one of the top urologists in the city and perhaps the country. He serves on several boards and is a member of the teaching staff at the university. He believes that prostate cancer is vastly over-treated and is the first person that I visited who was relatively comfortable with me following AS. However, I’m still deciding on biopsies. He disagrees that they cause cancer metastases. He said you can always find a claim for any position on the internet but that enough men are following AS, that if biopsies were causing cancer progression, the results would be readily apparent. He said, that there is no apparent difference in cancer progression in those who receive biopsies than those who didn’t. He also disagrees with claims that biopsies causes significant scarring. He said the prostate heals amazingly well and generally you would have more scarring if the needles were placed in your arm than in your prostate. However, like I said, I’m still contemplating these points of view. I’ve encountered a significant amount of men who after a prostatectomy found out that they had Gleason 7 that had advanced into the seminal vesicles. And these were men who had surgery after the one biopsy. I know that Ed wouldn’t change his opinion over a Gleason 7 diagnosis and I respect that, but I just wouldn’t be able to reject treatment in this instance. I’m also experiencing a nagging back pain and when you have this disease, you always question these types of symptoms – so like I said, I’m still contemplating the biopsy question. I suppose it should have been obvious but it struck me that one thing that Ed does have in common with the rest of us is that he also can’t escape dwelling on this disease. You don’t post with that kind of frequency and do that much research without prostate cancer consuming a significant part of your life. Looks like from that perspective, at least, that were all in the same boat.
Murray, first thanks for the citation for the article about pc found in autopsies. As you inferred, they classified pc with a Gleason of 6 or under as “clinically insignificant.” I find the comments of your urologist interesting, but not surprising. To sum up his statements he “disagrees that (biopsies) cause metastases” , states that “if biopsies were causing cancer progression the results would be readily apparent” and that “there is no apparent difference in cancer progression in those who receive biopsies than those who didn’t.” If I’m not mistaken, that last statement is simply unprovable because nobody knows what somebody’s cancer progression is unless they have a biopsy or a series of biopsies. What is his scientific basis for making such an assertion? I doubt that he has a basis for the first two points either. As pointed out in earlier posts on this topic, the medical community in China has long accepted that biopsies cause inflammation that can lead to metastases, not just PC but other kinds of cancer. The recent study showing that those who have undergone turp are much more likely to develop pc would seem to support the idea that invasive procedures can have a significantly negative effect on the prostate. This may not be proven conclusively through studies, but how can he conclude the opposite without some objective basis? As for the point that if biopsies caused cancer progression it would be “readily apparent,” I don’t know that anything about pc progression is readily apparent. But again, without a control group for scientific comparison, all of these statements seem suspect. The answer many urologists seem to resist is “we don’t know” which should be the appropriate answer in the absence of credible studies. This seems to be the problem with a whole range of issues with pc, starting with the psa test, which often means nothing and can lead to terrible outcomes, and was instituted and accepted by the medical community without sufficient rigor. What is the ethical basis for a physician to offer his opinions that could lead to radical treatments in the absence of solid evidence? I have heard more than one physician speak derisively about information obtained on the “internet,” but what really makes them uncomfortable is not having their exptertise accepted without question. Not that you, Murray, are accepting any of this without question. You have made clear your ambivalence about claims made by various parties, including doctors. As you said, we do seem to all really be in the same boat, struggling for answers that make sense.
I have yet to read a study cited, or a quote from an article writer, etc. that was in favor of no treatment for a man with an average 27 years of life expectancy left, that was in otherwise good health, and had a Gleason score of 8 or higher. The lesson here is to be careful whose advice you listen to. If a study is cited, check for factual accuracy & completeness (is the person citing the study leaving things out that don’t help his case). Be objective, not desperate, and do your own research rather than solely relying on someone else’s (otherwise you could be subject to that person’s agenda (or vendetta) which doesn’t have your best interest at heart). Ask yourself whether or not the advice seems sound & rational. See what his detractors have to say. As far as seeing the doctor is concerned, be informed & in charge when visiting your urologist’s office (informed choices works better if you are knowledgeable going in!). Question that which doesn’t sound right & get a second opinion if necessary.
Looks like this might be a good time to really wrap it up. I’m fairly certain that everyone’s journey to watchwait.com began with a PSA test. Since its widespread implementation before rigorous scientific validation more than 20 years ago, PSA testing has been slowly falling apart as one study after another has found that it has caused extensive harms and provided no benefit. Almost everyone here has already been harmed — physically by one or more biopsies — and psychologically by a cancer diagnosis. In 1996 a Stanford professor of medical ethics in arguing against PSA testing said: ” Watchful waiting will result in a large population of men (up to 15,000,000 in the U S alone) held captive by urologists.” And so here some of you are … lucky in one respect …because for one reason or other you have not yet been forced into treatment, as have millions of men before you. And of treatments for pc, that same doctor said: “The only patients we can really cure are precisely those who will live the longest without intervention” — a statement that is as true now as it was back then … and all that means is that what most of you have in store for yourselves is even greater harm without any benefit. Over the years WW has morphed into AS — nothing more than a diabolical ruse to keep a failed methodology alive for a long as possible. The system offered you two choices — we can take your prostate now or we can start taking it slowly in tiny pieces … bit by bit over time … pure torture … until you relent and let us take it all. “My doctor’s great … he’s the only one I’ve found who will support me in my AS” … I’ve heard that here more than once. Sorry … he’s not really that great … he knows he’ll get you sooner or later and all that extra income from all those extra biopsies is just a nice added bonus. You’ll know you’ve found a really good, honest and ethical doctor when you’ve found one who refuses to do any more PSA’s or biopsies and he can forcefully explain exactly why. All of my posts here have been an attempt to get you to “think different,” act for yourselves, question the system that brought you here, and hopefully jump off the AS train before it takes you beyond the point of no return … because once you get on board … the AS train doesn’t really make any stops … until it gets to its final destination … and that’s the OR.
Ed, I think this post fairly sums up your point of view, which I am starting to agree with, at least in part. I may post it somewhere else on the site so people can see it easily. As you know, I am now monitoring posts. You are welcome to continue to post occasionally and if there is something new to say.
Dear friends, I started this site with several purposes in mind: to allow those of us affected by prostate cancer to exchange information, to support one another, and to allow a free and open discussion of new developments and strategies, particularly where it relates to watchful waiting or active surveillance. I thought that, for the most part, that would best be accomplished in the context of a free, un-moderated listserv or forum. As a journalist, and by philosophical inclination, I am opposed to censorship. I wanted a safe place Â? where people could seek answers to their questions, recount their own experience, and express opinions when appropriate. I had hoped that everyone who chose to use this forum would conduct themselves with civility and goodwill. For the most part, that has been true, but to a significant degree it has not. So it is with some regret that I announce that starting in the next week or two, this forum will be moderated. That means that each time you post, it will first come to me, and I will approve/delete/modify as I see fit. Also, I will exercise my right as owner to ban anyone who is a repeat offender. Here is what will not be tolerated: Any (detected) posting under false names or identities. (If I have to, I will issue each person a unique password or initiate other security measures.) Any personal attacks of any kind. Any ad hominem arguments. Any bullying or threats. Any uncivil, immoderate language. For those of you who do not understand the difference, here is an illustration. Civil: I disagree with you, and here ™s why… Â? Personal/ad hominem: I disagree with you and you are an idiot and a sociopath. Â? I hope those of you who have felt intimidated or bullied will continue to use this forum. Others of you, please recognize the difference between a passionate argument, well made, and an offensive rant. In any case, there will no longer be any objectionable posts, because I will delete them before they ever hit the forum. In addition, I ask that all posts be kept to a maximum of 250 words (or I will edit them down) and that no one individual post more than once per week (or I will hold the post or delete it.) Thanks for your cooperation. Michael
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I feel I have to respond to Ed’s last post. First of all, I generally think he makes a valid point and I printed it out to show my urologist. However, I do think he diminishes the risk. Using Ed’s example, from what I’ve read about 300 men will have prostate cancer but only 43% of those will be clinically significant. So 129 will be clinically significant. Then I think it is a pretty good assumption that almost all of those 30 to die of the disease will fall within that clinically significant group. So if we’ve been diagnosed with clinically significant prostate cancer we have a 23% chance of dying from the disease and perhaps a 12% chance of dying from it before age 80. Still perhaps pretty good odds, but I think it is important to accept those odds before making a decision.
Murray, I apologize if you have already referenced this in an earlier post, but is there a study or article about which cancers are considered “clinically significant?” I recall a statement made by somebody’s urologist about this some time ago (he suggested most of the pc found in autopsy was not clinically significant) but I’ve not seen any guidelines on how one pc is deemed significant and another insignificant. It seems like any time a biopsy finds pc it is almost never deemed insignificant, even if the Gleason is relatively low. Thank you.
Murray, good thinking … and your thinking would be completely and totally valid if it were that easy … but now you have to continue your thought process a little further. It would be nice if we could just identify the “clinically significant” cancers and treat them and those 30 men are saved. But it doesn’t work that way in real life. FACT: “It is clear that even with PSA, Gleason grade, and sophisticated imaging tools, we are unable to clinically distinguish curable organ-confined prostate cancer from non-organ-confined incurable disease.” The facts are that to most men, cancer is cancer. They want it out. The FACTs are that more than half of those diagnosed will be treated fairly immediately regardless of anyone’s definition of significance. The facts are that the remaining half will now held captive by their urologist for the rest of their lives under AS or watchful waiting and get repeat biopsies until their cancer reaches “significance” and many of them will join the ranks of the treated. After that: FACT: “In 22% to 45% of men treated with radical prostatectomy, the operation may fail signaled by a detectable serum PSA, suggesting that up to 45% of treated men will harbor persistent cancer.” So its not just a simple matter of identifying cancer, treating it, and that man is saved — many treated will still die of pc. Lets just use the lower numbers, 22% of your 129 means 26 men that haven’t been cured. 26! Or go ahead and use Alan’s Dr. Walsh’s # of 29% after 20 years. That puts it at 39 men! 39! And that number will keep going up fairly quickly as more AS men are added to the treatment group after subsequent biopsies. We’re now in the territory where treatment may be KILLING more people than it is saving — and we haven’t even considered any of the ancillary factors that make the big picture so much worse. Such as the fact that one in 20, or 50, FIFTY of those 1000 men will suffer life threatening infections as a result of those biopsies. Some of those will die and if they don’t they will have a 12 times higher risk of eventually dying of pc regardless of biopsy finding. Its really not looking very good for your side right now is it Murray? Lets just throw in a couple more deaths on the operating table (5 out of a 1000 is the generally accepted figure) and a couple more from hospital mistakes and errors and now its looking pretty bad. Now throw in the occasional suicide (you know all about the stress of a cancer diagnosis). When you start adding it all up, back of the envelope now puts the number of deaths at close to 60! SIXTY! Now you’re TWICE as likely to DIE for having fallen into the medical industrial complex prostate cancer awareness abyss! Its one thing to wear a diaper for the rest of your life to save your life (as most survivors think) … and its another thing to realize that instead — you’ve possibly doubled your risk of dying! Any way you look at it Murray … the numbers just don’t add up. [Google the quotes for source of FACTs]
Bruce- Here is the site regarding the data. http://jnci.oxfordjournals.org/content/99/19/1484.full.pdf- They don’t seem to properly define “clinically significant” but it appears that Gleason grade and tumor size are considered in that evaluation. I would assume that “clinically significant” would mean anything that would be likely to be diagnosed for treatment in a patient. Ed – I think that being diagnosed with prostate cancer in one’s 50s has to increase the potential of being one of those 3% of the general population who die from it. I just accept that I’m taking a risk. But I have to agree that surgery isn’t a “free pass” from having a recurrence which is one of the reasons I have not had surgery. However, to believe that treatment does not lower the risk, in some cases, would mean that basically the entire medical community world-wide, is completely wrong and the only one who fully realizes this is an engineer living in the US. While you bring up some valid points, I just don’t think that the odds of that being reality are likely.
Welcome back Murray. (I typed this up last night when I thought you were not coming back, but I am still posting it in its entirety because it is still relevant). Here it is: One more post on Murray ™s behalf. I am writing to say shame on Ed for not trying to put a stop to Jim ™s sociopathic behavior, (which ended up driving Murray from this site), and for most recently adding to the problem by encouraging him. While I certainly do not blame Ed directly since only Jim is truly responsible, I do blame him for not speaking up against the behavior in the interest of maintaining the site ™s integrity. After all, while Michael can ™t do anything, Jim is a disciple of Ed ™s (or, in Jim ™s case, a minion of Ed ™s is a better word). It is because Murray & I don ™t share Ed ™s view that Jim behaves the way he does. So, I believe that if anybody could put a stop to it, Ed could because I think Jim would listen to him, but he has remained silent up until now, and in breaking his silence, he has only contributed to the problem. It would seem as though Jim & Ed are much alike in that they both lack a social conscience. Ed, you also do not have any empathy. You only think Jim is funny because he shares your narrow minded point of view. What if I posted the following? Ed Dwulet said I have to admit I was wrong. How could I be so stupid! If a man is a Gleason 8, 9 or 10 and is in otherwise good health with a life expectancy of almost 30 more years, he should be seeking treatment. I don ™t know where my head was at. Again, I ™m sorry for misleading you. Â? Funny huh? I am sure you would not think so. Of course, I would not stoop so low, but Jim would and has. So, think about how you would feel next time before opening your big mouth! Frankly, I believe Ed is glad to have Murray gone because it is one less challenge to his extremist views, leaving, it seems, only me left to counter him. He has come along way in a short time, from Michael telling him that he may have to edit or delete his posts on September 28th, to storming Â? off the site several times vowing not to return, to now standing one person away from total control of the subject matter on this site. You could at least do the decent thing and offer to buy the site from Michael. Then you could kick me off.
Thanks for the support Allan. I will try to keep involved.
Hey wait a minute you ingrate! I resemble that remark. nyuk, nyuyk, nyuk. Say how’d you know my real name was Curly? Whadya mean I didn’t know what I was doing? I soitanly did and I couldna done it without my two best pals Moe and Larry (Alan & Murray). Yeah stick around Larry. We’re a team. It wouldn’t be the same without you you two faced SOB first you hand me the victory and than you turn around and take it away. Well I oughta!!!!!! No hard feelings I hope. I mean to Moe. you know. when you play hide the finger! ruff ruff ruff. I’m outta here. wooooowooowooowoo. I didn’t mean it Moe. really I didn’t mean it. hahaha
A thought experiment based upon some rough back of the envelope calculations. Take 1000 men between 50 and 60 years old. We know that as a group they have a less than 3% chance of eventually dying of pc. Meaning about 30 men will die of pc and the 970 others will die of other causes. We know that the median age at death from pc is 80 years old –so only about 15 will die younger than 80. As I’ve said many times, those odds are good enough for me. I don’t want a PSA or DRE or biopsy … and as far as I’m concerned the number of men “saved” are offset by the number of “killed by treatment. So I’m happy enough to take my chances that I’ll probably be among the 985 who DON’T DIE of pc … and any life after 80 is just a gift anyway. Now assume biopsies are totally harmless and risk free. Biopsy all 1000 men. Per autopsy studies — somewhere between 300 and 400 of these men will be told they have some degree of prostate cancer. Afterwards … as a group, although nothing has really changed … most of these 300 – 400 men will now think their chances of dying of pc have increased from 3% to closer to 100%. This very sad state of affairs that we find men like Alan and Murray … so stressed by their “cancer diagnosis” that they aren’t even able to ignore a stooge on a public internet forum (who is actually sometimes quite funny). Whether Jim realizes what he is doing or not, he is just highlighting the fact that this whole prostate cancer issue is nothing but a farcical black comedy based upon a lack of intelligence, understanding, reason, and common sense.
Jim G. I know that I’m wasting my breath and probably even encouraging you but I feel that I have to say the following – and I’m speaking of your posts. IMO, you’ve never made a meaningful contribution to this site. Your only objective seems to be to criticize or harass other members. You are causing aggravation to those already dealing with the enormous stress of a cancer diagnosis. Is your life really that meaningless?
A follow up. I’ve also decided that I can no longer post on this site due to the lack of moderation and security. I don’t blame Michael as I’m sure that he never anticipated, as I also wouldn’t have, that such events would take place. So I hand you another victory Jim G. – I hope it brings you some happiness.
@ Murray (& Michael…and all). I know it is aggravating, frustrating & stressful. I, myself, have been tempted to lash out using the kind of language that would get me kicked off the site. Wouldn’t that be ironic? The one being harassed kicked off the sight because of a sociopath. Still, sometimes I think it would be worth it. The reality though is that if he drives you away, he does win, and he will likely go on to drive others away who don ™t share Ed ™s view as well. The result will be that it will become Ed ™s site —it practically is right now. If you leave, it will be one step closer to a reality. Think about it. This is an AS site and when was the last time AS subjects were really discussed? Mason has a few posts about radiology based biopsies. You talked briefly about MRI-2 (which I would like to know more about), and I talked about Prostavysion. That is all I can think of in recent memory because the rest of the site is being consumed by Ed ™s relentless crusade. As far as Jim G. is concerned, he uses the word vindication because it is safe to do so knowing as he does that he can ™t be caught since he can use an endless list of fake e-mail addresses. Even if Michael took the time to read his posts (which I wish he would do to see the destructive nature of the content) and banned him on that basis (which he won ™t do because it is not proof), then Jim could just post under a different name as well as a different e-mail address. SO, WHAT IS THE SOLUTION? IMO, IT IS THIS: IF YOU DON’T FEED THE FIRE, IT WILL LIKELY, IN TIME, DIE OUT. Also, you can ™t be stressed by something you have chosen to ignore (I mean truly ignore, except to make the readers aware of any fake postings in a simple matter-of-fact, non-stressful way). That is the plan I have already put in place. I wouldn ™t be writing about Jim at all if you hadn ™t said you were leaving. I don ™t know if you are still around to read this, but I hope you will re-consider. The site NEEDS YOU! If I have not convinced you to stay, then I wish you long-term health and thank you for your contributions. (It may seem like they go unappreciated because Ed & his disciples make more noise, but there are more readers out there who appreciate your posts despite what Ed and the like would have you & others believe).
Worth a read re: informed choice regarding PSA/ doctor patient discussions/ and why it wasn’t really possible before 2009 … and why “office-based discussion of the pros and cons of PSA testing was essentially a charade.” ///http://www.nejm.org/doi/full/10.1056/NEJMp1112191 ///. Read that and then read the best ever article ever written 15 years ago and see the same exact issues being raised: /// http://www.issuesinmedicalethics.org/043mi074.html /// In the interim millions of men have been harmed, countless numbers have been killed by the process itself and many remained trapped.
Well EXCUSE ME. This is a public forum. Forum means a place to express ideas and right here certain people have even brought up child abuse and other certain people have brought up calling the police for slander so I guess nothing is off limits except for those certain people who are calling the kettle black. Somebody else here said you can just feel free to skip over posts you don’t like and I think certain people are just using this issue as a diversion because their on topic posts have been proven ridiculous and in case certain people havent noticed nobody else cares about this but them. Now Mason you are so right about about people being like a gallon of milk on a grocery shelf but dont you think that certain other people in this world are like a half pint of that awful imitation soy milk.
Again back to Australia: ‘ Australian and New Zealand men should be reassured that the PSA (prostate specific antigen) blood test for prostate cancer saves lives according to the peak body representing urological surgeons in both countries.’ “Currently the PSA test conducted in conjunction with a physical examination is the best available ‘flag’ for the possibility of prostate cancer,” says Dr Stephen Ruthven, President of the Urological Society of Australia and New Zealand. http://www.asianetnews.net/view-release?pr-id=46683
OK Tony … by my count that’s 3 Australian Health advisory groups for me — and 1 for you. So I guess you win …
Jim G – If it is you who is doing the false posting, I will remind you that people have been successfully charged and sued for using other people’s names for slanderous purposes. If this continues, I would ask that Michael contact the police.
Ed, “Winning” wasn’t my intent on commenting on your post to begin with. I am just making the point that in Australia/New Zealand, like here, the epidemiologists have come to the conclusion that you have and AS I HAVE, that both screening the general population for prostate cancer not only shows no conclusive proof of any health benefits but a host of evidence of severe deleterious effects They have also, like you and ME have come to the conclusion that treatment can well be a harmful folly to begin with. Also, LIKE HERE, the Urologists as a whole, adamantly disagree with the above and that is why I state the fact that the de facto screening numbers, biopsies, treatments parallel the practice here. While Australian physicians do well economically, the profit motive isn’t as insane as it is in the US, so the motivation to treat MAY be more driven by belief that they are doing the right thing for the patient based on the clinical evidence they see. Again, you and I are largely on the same page on this issue. I am just commenting on the reality of the practice of medicine over there. Tony M.
Many men go for annual physicals where a DRE is usually performed year after year. Prostate biopsies of one form or another and TURP/RP surgeries have been performed for at least the last 50 years. Whether its mechanical manipulation of probable tumors in an aged gland that’s already breaking down on its own — or invasive inflammatory procedures — all have the potential to introduce pc cells into the bloodstream — all have had a hand in developing the 3% chance that men in this country eventually may die of pc. We know some small number of RP’s compared to the number performed may be saving some men and that is also reflected in the 3% number. No one really dies of pc … they die from the spread of pc … metastasis — all of these procedures can contribute to metastasis. Just something to think about and contemplate. What would be the natural death rate for pc in the USA if these procedures were never done? Would we still have a 3% chance of dying of pc? Or might that number be lower? Has the pc monster been created by the system itself ? Could most of that 3% just be a bi-product of modern medicine?
From today’s news. Different disease. Same story. /// “The science shows us that Avastin does not save lives and that it harms women.” /// “FDA Administrator Margaret Hamburg issued a 69-page decision outlining her decision, which was based on the recommendation of a six-member FDA advisory committee that unanimously concluded in June that the drug was harming women more than it was helping.” /// “It is unfortunate that Avastin does not [work]. Marketing campaigns and appeals by the public devastated by breast cancer cannot change that.” /// “It is also being seen as one of the most visible medical examples of scientific evidence winning out over an animated public outcry. ” ///”The decision was condemned by patient advocacy groups.” /// “we have yet another tragic mistake by the FDA” /// And how about this guy — who like Alan knows the real “facts” … and who like Murray … thinks FDA decisions should be based upon “stories” told by survivors: The fact remains that thousands of women today depend on Avastin as a vital tool in their fight against breast cancer, and the FDA should not have taken that option off the table by rationing access, Â? said Sen. David Vitter (R-La.) Throughout this process, I expressed my deep concerns and objections to restricting access to Avastin, and I hoped that we might persuade the agency to change course by highlighting the stories of specific women whose lives have been extended because of it. Sadly, the FDA has decided to take that option away from them. Â?/// What’s really sad is that clowns like this are one of a 100 making laws that affect 300 million. “Stories!” Want to bet that rather than acknowledging evolution, this idiot has a different explanation that also involves a “story.”
Basically we are like a gallon of milk on the grocery shelf. We have an expiration date but we do not know what the date is. If I had not chosen the MRI vs biopsy I would have endured un-necessary pain, suffering and possible damage. My X-Urologist said there is a 0.5% mortality rate with traditional biopsy.
The cops. Murray please don’t call the cops. They aren’t interested and besides they have better things to do. This obviously involves interstate commerce and is a matter for the FBI. Sooooo if I were you I wouldn’t waste any time give Agent Prostametto a call right away and get him on the case. Go ask your buddy Al for the number and then when I am vindicated I will expect a full apology OR ELSE. You know slander cuts both ways Murray and although I am not the litigious type I might make an exception for you and you’ll pay through the nose.
OK … you don’t like KSA or Australia … how about Japan … saving lives is saving lives … regardless of the pc death rate… either a screen works or it doesn’t … either treatment for pc works or it doesn’t. The Japanese Guideline for Prostate Cancer Screening: “Overall, the evidence that screening reduced mortality from prostate cancer was insufficient. Furthermore, prostate cancer screening is associated with serious harms, including overdiagnosis, adverse effects of needle biopsy and adverse effects of local prostatectomy. At present, the evidence for the effect of prostate cancer screening is insufficient. Both PSA and DRE were not recommended for population-based screening programs …” /// http://jjco.oxfordjournals.org/content/39/6/339.full /// No screening means no diagnosis … no diagnosis means no treatment. The only reason I brought up these top class public health system’s recommendations in the first place was because they specifically exclude DRE’s, not just PSA. The only thing de facto about them is the tacit admission that however pc may be found TREATMENT DOESN’T WORK.
Yes posting has risks … it has the risk of revealing one’s critical thinking ability. After two years of research and two biopsies he says: ” Here’s my problem. Take, for example, a 51 year old with PC (which is when I was diagnosed). If he does nothing about it, he could metastasize by the time he is 61…” This is the kind of thinking of those on the wrong side of this argument, its the exact same kind of thinking prevalent in all the very vocal survivors, its how they became survivors, each and every one who “believes” his life was saved by treatment, and they are shamelessly abetted and urged on by the large and powerful vested interests of the for-profit medical industrial complex … while on the other side we have independent unbiased knowledgeable professionals and most of the rest of the world.
Alan and Murray #1 We have identified the imposters and have or soon will remove their posts. The one who told you to “go f yourself” will be banned. If any further imposters post, let me know.
Thank you Michael for your follow through.
Since my thinking & reasoning ability is being challenged and I am being insulted in the process, I will respond. Ed, I have two questions for you that will expose your LACK OF thinking & reasoning ability to all who read this. ONE: Do you think a 51 year old with a Gleason 8, 9, or 10 should be treated? Don ™t answer this one. I will for you. Of course you don ™t. If I go no further, I could rest my case against the unsound nature of your thinking & reasoning right here. TWO: (I am putting PC aside for this question to focus on other cancers). Would you be in favor of treating children with cancer? I posed this question to you once before and got no response. NOW, I WANT AN ANSWER!
Thanks Michael for taking care of the imposter issue.
Finally I’m vindicated! If you ask me I think it was that Murray Oickle guy.
@ Murray (& Michael). Unfortunately, it looks like Michael’s efforts fell short (through no fault of his own). My wife said that we wouldn’t be able to pull the plug on him because all he would have to do is use different fake e-mail addresses. The fake “Alan” postings of November 3rd & 9th are gone, but the fake “Murray” postings of November 10th are still there. Unless Michael can do something more, it looks like ignoring the culprit is still the way to go. Of course, the readers should still be alerted to any further fake postings.
Ed, this goes back to your post of 11/12/11 regarding spread of cancerous cells from massage of the prostate and the value of DRE’s. Is it your view that DRE simply poses more risks than benefits and should not be done? If DRE is done and growth is found, is it your position that even in this case treatment poses too many risks and would not be beneficial? Some of us have rejected psa testing but DRE may still be on the table. I have a friend who has psa of less than 1, but cancerous growth was found in DRE.
OK … here it is … more research … TRUS biopsies ARE A RISK for disseminating pc cells into the bloodstream. In the case of TURP surgeries 3 men showed who showed no circulating pc cells before surgery had a “highly intense positive” reading after surgery. Other research just released last September, that I’ve previously cited here, showed that men who had undergone TURP had a 12X higher risk of eventually dying of pc. How many men are eventually die from needless biopsies? I’m waiting for that study! /// http://www.ncbi.nlm.nih.gov/pubmed/9111619 ///
Bruce. From the Australian physicians recommendations, in speaking about surgical treatment for pc, they say “the evidence that this procedure will in fact save men’s lives is by no means well established.” From the best ever article on the American psuedo-epidemic of pc, that I’ve referred to a million times: ” therapies available to treat the disease, if detected, are of no proven benefit” and “there is no acceptable evidence that any current treatment of cancer of the prostate improves mortality.” From the Merck Manual: “Patients with well-differentiated cancer do just as well with or without treatment, and those with poorly differentiated cancers tend to do poorly with or without treatment.” Sorry about your friend Bruce, but it doesn’t get any simpler than all that, whether found by DRE, or biopsy he’s in the same position as anyone else regardless of method of detection. He may have been better off left alone as both have the potential to make things worse. Both might have cells introduced pc cells into their bloodstreams — and seeded metastatic pc elsewhere in their bodies. So its clear to me at least, that there is a [as yet unquantified] risk to these procedures with ZERO benefit! My guess is that the risk is small. A good analogy might be x-rays. You can find lots of info on the net with regards to the theoretical cancer-causing risk of x-rays, (i.e. a 1 in 3000 chance of a lower gi series causing a fatal cancer versus a 1 in a 1,000,000 for a single dental x-ray). My guess is that a DRE might be equivalent to a chest x-ray a biopsy, maybe a contrast barium swallow TRUS surgery, possibly a CT scan). X rays are equally abused and overused in our for-profit system — but depending upon the circumstances they may have a very positive risk/benefit profile towards diagnosing CURABLE illness. That is simply not the case for DRE’s or biopsies and pc.
Murray and Alan: i will look into the matter of the fake postings to the best if my ability.
Regarding Australia: The same studies and advisories are used as in US and the defacto treatment is much like here. PSA testing, Biopsies, treatment.
@ Tony M. Thank you for the confirmation.
Sorry Tony … not true. “The Australian government ™s Australian Health Technology Advisory Committee examined the case for population screening for prostate cancer and in its 1997 report , did not recommend it. Thirteen years on, it has not changed that recommendation.” “No state Cancer Council nor their national body, the Cancer Council Australia supports screening: The Cancer Council supports expert reviews that current evidence does not support population screening of well men for prostate cancer. Â? The Royal Australian College of General Practitioners: Routine screening for prostate cancer with digital rectal examination (DRE), Prostate Specific Antigen (PSA) or transabdominal ultrasound is not recommended. Â? /// http://ses.library.usyd.edu.au/bitstream/2123/6835/3/Let-sleeping-dogs-lie.pdf ///
I’m certain that PSA, biopsies and treatments are the same and used all the time … and they are probably demanded by many uninformed men … but they are not recommended.
Re: THE VICIOUS CIRCLE: I very recently stated the following: I post in the hopes of offering a balanced view, and because I don ™t want to see this AS site become, for all intents & purposes, Ed ™s site. If Murray and I stopped posting, based upon what I have read on this site, there would be no one left to offer that more balanced view and I am afraid that is what would happen Â?. Still, I will TRY not to go tit for tat with Ed, where I post every time he posts. That can become almost like a full-time job because it seems to be a sure bet that if I post he will follow with a response, and then where would it end â€œ hence, the vicious circle. SO, IF ED POSTS AND I DON ™T RESPOND, IT IS NOT BECAUSE I AGREE WITH HIM OR HAVE NOTHING TO COUNTER WITH. IT WILL SIMPLY BE BECAUSE I ALREADY RESPONDED IN A PREVIOUS POST.** For example, yesterday Ed wrote the following: Anyone naive enough to believe the self serving “success” statistics of a prostate removal factory might also be interested in buying a really nice bridge in Brooklyn Â?. I, in turn, did not counter because on November 9th I already posted on the subject. (The topic was the John Hopkins 20 plus year data on RP that showed an undetectable PSA for 71% of the patients @ 20 years, which, in turn, meant that 29% had experienced a recurrence of their cancer). I had this to say: It seems clear to me that these figures aren ™t fabricated (as some might say) because, after all, 29% @ 20 years is no small number â€œ it is almost 3 out of every 10 patients Â?. So, to wrap up, I am not saying that I am going away and not coming back like Ed has said sooo many times. I will still speak up when I feel I need to. Rather, I am just trying to keep the site from getting so repetitive. If I don ™t respond every time, maybe it will give Ed less cause to post as often as he does. We ™ll see. …….**Of course, the down side of this plan is that new readers will not know that a lack of response just means that the subject has already been addressed, but that is one of the reasons that I am glad Murray is posting as well. It makes me feel better about having the bases covered. Still, it would be nice to have more patients practicing AS posting in order to insure that the integrity of the site is maintained.
Thanks for that clarification, everyone appreciates it — as I’m sure they appreciate that hostility is often the response to one’s long held “belief’s” being challenged by facts … and as well that hostility is often the only avenue left for someone to express their frustration at having allowed those belief’s to back themselves into a corner with no real possibility of escape. It could also be that responding too often to a post might reveal an embarrassing suspect reasoning ability: ( i.e. if a 100 million babies were born in the USA tomorrow we would have a “predominantly young” population — and yet that would have no effect on our pc death rate — that is another fact). People who think otherwise are the same kind of people on the “PSA testing saves lives” side of the argument. They are trapped … and are only here to commiserate with like minded people who find themselves in the same boat as they are.
Anyone naive enough to believe the self serving “success” statistics of a prostate removal factory might also be interested in buying a really nice bridge in Brooklyn. Thinking of surgery? Think again. From Australia: A 2003 review of the [PSA] issue in the Lancet concluded that if one million men over 50 were screened, about 110,000 with raised PSAs will face anxiety of possible cancer, about 90,000 will undergo biopsy, and 20,000 will be diagnosed with cancer. If 10,000 of these men underwent surgery, about 10 would die of the operation, 300 will develop severe urinary incontinence and even in the best hands 4000 will become impotent. And then came the crunch: THE NUMBER OF MEN WHOSE PROSTATE CANCER WOULD HAVE IMPINGED ON THEIR LIVES IS UNKNOWN. This neat summary encapsulates why this issue is so important. Men are being increasingly urged by some to subject themselves to a medical procedure that may dramatically reduce their quality of life by causing impotence and incontinence. BUT THE EVIDENCE THAT THIS PROCEDURE WILL IN FACT SAVE MEN’S LIVES IS BY NO MEANS WELL ESTABLISHED, while the risks are known and very real.
From Australia, a country offering first class NON-PROFIT universal health care to all it its citizens. //// The Royal Australian College of General Practitioners: Routine screening for prostate cancer with digital rectal examination (DRE), Prostate Specific Antigen (PSA) or transabdominal ultrasound is not recommended. Â?//// No conditions, no age caveats, no waffling to try to tone down or bow to various constituencies … in Australia they don’t mess around. NO testing of any kind, hence NO biopsies and hence NO diagnoses … and that means NO needless surgeries and NO needless harm.
I’ve been avoiding this site as I’ve been frustrated with unheeded requests for Michael to remove posts that are not by me and Alan. Perhaps there is a good reason for this, so I won’t judge at this time. As for PC in Saudi Arabia, I checked a few Saudi sites and find no information stating that they do not regularly perform DREs. In fact, they all mention this procedure and it seems, from the sites I visited, relatively common. I know diet is a very sketchy area and often verges on “best guess” but although Saudis eat a lot of meat and dairy products they also consume some foods that are thought to inhibit prostate cancer. – they regularly use a spice mixture that contains saffron – they use quite a lot of turmeric – they generally consume less processed food and more vegetable products in their diet than North America – their diet has significantly more fiber than ours does – they use more garlic, onions and hot peppers than we do, their use less sugar – they drink a lot of tea
As for Australia they have one of the highest incidences of Prostate cancer world-wide. Hard to believe that their not performing DREs or biopsies. How are they finding it? http://www.wcrf.org/cancer_facts/prostate-cancer-worldwide.php
Murry, I agree with most of what you say. Can you define “old age” ? Better techniques yield earlier detection and prvention. I see a lot of argueing on the forum. This is my observation. urologist make money by doing biopsies and putting in stents. They are unwillling to “shake hands” with the radiologist except it be a last resort. Follow the dollar! I see a fight between specialists. The Urologist has little Radiology experience and the Radiologist is learning how to do precise biopsies. Bottom line: Lose of revenue for Urologist.
If you google http://www.cancerscreening.gov.au it will take you to the Australian Government Department of Health & Ageing website Once there, scroll down to the bottom of the page to find the following: Prostate Cancer Screening in Australia: Position Statement Â?. Click on that and scroll down to Conclusion Â?. What you will find is that they basically take the same position as the USPSTF, which includes being in favor of INFORMED CHOICES being made after speaking to one ™s doctor. (I would cut & paste the statement for you to read, but it won ™t allow it). So, it would seem that circumstances there are no different than in the U.S. Of course, in the U.S. widespread screening is being done in spite of the USPSTF Recommendations. Ed says that is not the case in Australia, although I see no references to back that up. Plus, Murray makes a good point when he stated As for Australia they have one of the highest incidences of Prostate cancer world-wide. Hard to believe that their not performing DREs or biopsies. How are they finding it Â??
(The 1st of 3 back-to-back related postings). Re: Ed ™s Saudi Arabia Study: A Different Perspective. I did read the reports Ed and I find that you play fast & loose with the study data, picking out those things that help make your case while conveniently leaving out that which does not, and even adding content that is neither stated or implied in the study (specifically, this statement: A place where men’s prostates are usually left alone because Saudi men are culturally reluctant to submit to DRE’s… Â?). At the same time, you cover yourself with words like may not Â? and could Â?, which in & of itself is good, but it also lends itself to unsubstantiated conjecture (e.g. making a case for circulating PC cells in the blood from biopsies & surgeries, when you yourself admitted that you don ™t have any quantifiable data to back it up). Here are some of my own quotes from the study, the content of which Ed didn ™t touch on: (In regards to data that shows that PC occurs at a lower incidence rate than western countries), the study states the following: The obvious MAIN REASON for this low incidence rate is that PC is only common in aged male population that is lacking in the Kingdom of Saudi Arabia (KSA) whose population is predominately young Â?. It also states that Genetic, familial pre-disposition & environmental factors, in addition to methods of cancer detection & reporting contribute to these variations. Finally, when Ed states …so diet may have nothing to do with it! Â? he is conveniently overlooking this study passage: …logic and practical measures include dietary modification Â?.
(The 2nd of 3 back-to-back related postings). Re: The USPSTF Recommendations and the No Test/ No Treatment Philosophy â€œ A More Practical View. (FOR THE RECORD, before addressing this subject, I want to make it clear that I do not have a treatment bias. Actually, I have an AS bias. Personally, I think that the USPSTF age range listed below is too high, keeping in mind that the average life expectancy in the U.S. is 78.1 years. I believe that treatment should only be CONSIDERED if you can be expected to live AT LEAST 10 more years and are in overall good health (aside from the PC). I also do not think that treatment is the right way to go for every 50 year old. Instead, I believe in INFORMED CHOICES (which IMO is what the USPSTF is in favor of) and that means monitoring ONCE YOU KNOW YOU HAVE PC. Lastly, I post in the hopes of offering a balanced view, and because I don ™t want to see this AS site become, for all intents & purposes, Ed ™s site. If Murray and I stopped posting, based upon what I have read on this site, there would be no one left to offer that more balanced view and I am afraid that is what would happen. Michael, who believes in AS, simply does not take an active enough role in the site (and that is fine. I don ™t have a problem with that). NOW, ON TO THE SUBJECT MATTER. In the previous post I said that ED plays fast & loose with study data. I present this as another example. He has made several references to the USPSTF Recommendations to support his no testing or treatment for PC Â? position, but never once did he mention that the actual position of the USPSTF is to DISCUSS with the patient the uncertain benefits and known harms Â? of screening and treatment, and that the patient should be informed of the gaps in the evidence and should be assisted in considering their personal preferences before deciding whether to be tested Â?. In other words, the position of the USPSTF is to leave the decision up to the INFORMED patient as opposed to no one should be tested. Likewise, when it comes to treatment, the USPSTF states that If treatment for prostate cancer detected by screening improves health outcomes, the population most likely to benefit from screening will be men age 50 to 74 years Â? because …the length of time required to experience a mortality benefit is greater than 10 years. Â? So, basically it is saying that, if you can be expected to live longer than 10 years, then treatment is something to be considered if that treatment can be shown to improve your long term health (and if you go back and look at the 20 plus year John Hopkins RP data I posted on November 9th, it did just that â€œ for 71% of those treated, it meant no detectable cancer @ 20 years). So, in summary, Ed and the USPSTF are not in total agreement on leaving your prostate alone â€œ the USPSTF having a much more practical view.
(The 3rd of 3 back-to-back related postings). For all those for whom RP MAY be a consideration in the future: I stated in an earlier post to Murray that the John Hopkins 20 plus year data presented more realistic success rate figures than the ones from sites claiming >90% @ 20 years. However, the reality is, around the country as a whole, the success rate figures are probably not as good as those at Hopkins. I say this because it is recognized that the experience and talent of the surgeon can make a difference in how well a patient does after RP in regards to incontinence, impotence, etc. All over the U.S., RPs are being performed by doctors with varying degrees of expertise, resulting in nationwide post-op side effect figures not as good as those published by your more renowned surgeons. So, IMO it stands to reason that if the skill set of your surgeon can affect how well you fare after your RP when it comes to side effects, then it can also affect how well you do as far as your long term prognosis is concerned. The point I am making is that, if you decide it is time for surgery, don ™t settle for the local hospital down the street or the local urologist/surgeon who helps monitor your cancer (unless they have an excellent reputation, and have verifiable independently collected data). Literally, go the extra mile, or the extra 1000 miles if at all possible, to find the best doctor available. For example, when it looked like I was going to have surgery, I contacted Dr. Walsh ™s office to see if he was taking on new patients. He was not, but if he was, then I was willing to go from New England to Baltimore, MD to have my surgery performed there. With Dr. Walsh unavailable, I turned to one of the best RP surgeons in the country (according to published online data), who just happened to be @ Lahey Clinic where I have been going to have my cancer monitored. With all do respect to the urologist I see there (who does do surgeries), I would never even consider having him operate on me. The Clinic understands that kind of thinking well. When I asked them whether or not it was OK to seek out their best surgeon despite already seeing a urologist/surgeon there, they said that I could make an appointment with any surgeon I wanted. This is a decision not to be taken lightly. Nor is it one where you should feel a sense of obligation to your local urologist. IMO, that feeling is misplaced. After all, whoever you choose will literally have your life in his hands – in the short term (involving side effects) and the long term (involving your undetectable PSA status).
Old people tend to die more often then young people in every culture. The fact that any particular culture might be predominantly young has little to do with eventual cause of death statistics and death RATES as a % of all people who die. For example death from coronary heart disease, like pc, occurs almost exclusively the elderly and not the young. Saudi Arabia’s and the USA’s RATE’s are essentially equal, with Arabia’s actually slightly worse — and its not young people who are dying. Again a failure to understand basic statistics. I have provided medical journal references which describe prostate massage and pc surgeries as introducing pc cells into general circulation. The fact that biopsies also do is my speculation. Again … in which chapter of his book does Dr. Walsh talk about surgical dissemination of pc cells? With respect to diet there’s one study. Ornish. One study is meaningless. 93 men for two years! 93 is meaningless. Two years is meaningless. He hand selected his study participants. His end point results were slightly lower PSA’s, +/- 5% — a result as likely or not to have occurred by chance. Even if not a chance finding, a slightly lower PSA reading is meaningless.
One can prove or disprove anything with stastics. Blind biopsies are a poor method of detection when radialogy has steped up to the plate with good 3 Tesla imaging. When all else fails for detection of PC by saturation biopsy..ugh the patient is refered to a radiologist. Just google 3 Tesla MRI/MRI-S and you will find the latest technology for PC detection. “theory guides and experiment decides” . Blind biopsy is like dentistry without X-Rays. IMO the prostate is a gland that must be used to remain healthy i.e. lots of intercorse. “Use it or lose it” . My neighbor uses the same urolgist I DID. He had a radical Prostatectomy and got on Lupron. Urologist sent him for bone scan and full PET scan. He said our next course of action in castration. Sad story huh? Women have testerone as well. It in produced in the adrenal gland on top of the kidney. I guess the next step after catration will be to remove his kidneys.
Now if I wanted to help someone make an intelligent argument against my thesis and account for the fact that pc is primarily a disease of old age I would tell them to look at life expectancy rather than the number of young people in a country’s population. Furthermore, I would cite the genetic uniformity of the Saudi’s as opposed to the diversity of the USA or the fact that our statistics include many blacks who proportionately die of pc in greater numbers … or any number of other INTELLIGENT arguments. On the other hand anyone who’s really read my last few posts knows that I was simply engaging in an intellectual exercise. I was SPECULATING on whether or not their might be a untouched culture where we be able to gain some insight into the natural rate of pc occurrence without medical interference. Of course it will always be subjectively debatable and unprovable whether or not someone might be culturally adverse to a DRE – but its really irrelevant — in a culture where death from pc is so rare they just might be intelligently adverse to a DRE because they feel it is simply unnecessary. And it helps that no one in their oil-rich country’s universal coverage non-profit health care system is constantly bombarding them with propaganda about getting tested before pc “KILLS” them. No one there is dying of pc so they’ve seen no need to implement PSA testing and what MAY BE happening is that we are seeing a virtual cycle: no dre, no biopsies, leading to a lower death rate from pc leading to even fewer dre’s and biopsies leading to even fewer pc deaths. Now if I were king of the world and I wanted to actually PROVE this — I might commission a study of 20,000 men. Half would get no DRE’s or PSA’s and 1/2 would get the usual standard of care men have gotten in this country the last 20 years. And after 30 years I’m saying there would be no difference AT BEST … A PUSH … and at worse more men would be dead in the standard of care group — from from cancer spread by dre and biopsies and biopsy infections and death on the op table and from complications of surgery and hospital mistakes and errors and suicide and recurrence of pc after surgery and radiation induced cancer and general mental and physical ill health as lifelong cancer patients (and not only that — a whole lot of men would have been harmed for absolutely nothing).
@ Miichael … Does your medical oncologist do your biopsies? Will a medical oncologist feel comfortable monitoring with AS without biopsies and maybe MRI instead? Mason has taken a different non-invasive approach (?) as mentioned in his email below.
Current prostate biopsies techniques are 25 years old. Now with 3 Tesla imanging an acurate biopsy can be done. Blind biopisies will be an archaic method of PC detection. Radialogy and Urologists must “fuse” techniques and not “follow the dollar” in detection. New techniques are rising like the sun.
I have been continuing my research into circulating pc cells. Nothing yet about biopsies but “would you believe” DRE’s introducing pc cells into your bloodstream? Just something to contemplate during your next DRE … or if you are stupid enough to submit to a PCA3: “The clinical significance of circulating prostate cancer cells has long been questioned. Jonasson and associates reported transient dissemination of prostate cancer cells into the vena cava as detected by a Papanicolaou stain in patients undergoing a rectal massage or a transurethral resection of the prostate. Interestingly, these cells reached peak detectable levels in the first 10 minutes after the massage.” (I have previously cited a recent study showing that patients who have undergone TURP have a 12 times higher risk of death from prostate cancer). It makes me wonder what the natural background level of death from pc would be in a population of men who have never had a DRE (i.e. who have followed my advice and always just LEFT THEIR PROSTATE’s ALONE).
OK. Here it is Saudi Arabia — a great place to study the natural history of pc. A place where men’s prostates are usually left alone because Saudi men are culturally reluctant to submit to DRE’s … and (as of 2002) PSA has not been widely implemented. Their death rates from pc are 3X lower than Japan ..so diet may have nothing to do with it! Its extremely low — so low that more men die from rare pancreactic cancer in Saudi Arabia than pc! That’s just unbelievable! Some quotes: “Over the past 2 decades cancer of the prostate (CaP) has been the most frequently diagnosed cancer in the Americans and the second most common in European men. The rates are progressively increasing. But this is not the case for eastern countries so far, especially in the Kingdom of Saudi Arabia (KSA). On the contrary, this article will show that this cancer is still not frequently diagnosed in KSA, a great opportunity for us to study its natural history …” “http://www.worldlifeexpectancy.com/country-health-profile/saudi-arabia ” “http://www.smj.org.sa/PDFFiles/Jun03/01prostate.pdf” Read the reports. Imagine that — no testing, hence no diagnosis, and hence no treatments … and one of the lowest rates of mortality from pc in the world! So now I’ve shown that DRE’s, biopsies, TURP and RP surgeries all introduce pc cells into the bloodstream and all have been a part of standard medical care in this country for a very long time and all could be contributing to the much higher rate of death from pc in United States. I’ve heard many men repeatedly refer to Walsh’s book in this forum — does he even discuss the fact that his surgeries introduce pc cells into the bloodstream?
I am a newbie here. 53 year old and have had a 1 point increase in PSA each year for the last three years. 4.4 now. I had a 3 Tesla MRI image done w/wo contrast. Three spots on my prostate showed these densities. 857 on 1 and greater than 1000 on the other 2. The radiologist said a a traditional biopsy would have missed the 857 spot. I chose MRI over biopsy because it was painless. He gave me a Gleason score of 6 based on the 857 spot. I also have prostratitis eventhough I have taken levaquin for 28days. I will try the suggested diet and modifications on food and report back after next MRI in 6 months.
I corrected my e-mail address for my previous post under Mason.
The Radiologist I saw bought his on 3 Tesla MRI. A 25 million dollar instrument. His name is Dr. Joe Busch. He makes several trips to the Netherlans where They are developing laser instruments guided by 3 Tesla MRI to zap the small tumors instead of radical Prostate removal. He also said and I have read that biopsy of the gland can “let the horse out of the barn” if a tumor near the capsule is ruptured. Kind Regards and thanks for the diet info.
Michael – It’s obvious that your site is being sabotaged by someone masquerading as other members, as well as someone who has no desire to contribute to the conversation, but only to antagonize other members. (Very unfortunate that someone is so miserable to try to antagonize people who are already dealing with the stress of a cancer diagnosis, but I suppose we have to realize that some people are without a conscience.) Considering that this is the only forum that I know of that is dedicated to Active Surveillance it would be a shame if such people are capable of destroying this forum. However, every challenge has a positive aspect. It may be an occasion to consider updating the site to a more conventional forum format with passwords and the ability to create separate threads and edit our text. It would be good, for example to have individual threads on topics such as diet or individual medical studies.
Murray – Thanks for your support. It is nice to know that I am not alone in trying to get something done about this abhorrent behavior.
OK heres a quick summary. Alan said lets get’s civil and asks Ed a completely stupid question and who knows why Ed went out of his way to write him a detailed response and he even adds in a great study about PC surgery with lots of good stuff I’ve never seen before to show him why his question was so stupid. Alan totally ignored it all and went on rant about who knows what because I just skip over anything he posts so I only said why bother its like talking to a wall and then suddenly Al is pointing his fragrant fingers at me and attacking me as some kind of imposter. I say again this was a pretty civil board until Al came along and rather than change anything Michael might want to just put Al in direct contact with Murray who is the only one interested in anything he has to say and they can get together on their own and exchange tofuti recipes and if you ask me psycho Al is the only one posting as Alan as there seems to be a consistant thread to all those posts that makes me think hes probably suffered some kind of altar boy abuse as a child.
Alan, If what Jim G is saying is true, I seriously urge you to seek counseling. There’s always hope and recognizing that you have a problem is the first step along the road to recovery. I’m sorry for any part I may have played in encouraging you.
Jim with every post, you are showing the readers who & what you really are, and frankly, you’re embarrassing yourself. For the record, I did not ignore Ed. Rather, I countered Ed’s position with my own sited studies & opinion. This is a forum after all. Now, I am going to take my own advice that I gave in an earlier post and ignore you in the future. If Michael doesn’t do anything about this, then I will just have to continue to identify false postings and hope that he eventually sees that such actions are a threat to the integrity of his website. It is for this reason that I would hope that all the readers would call for a stop to this, regardless of their differing points of view and sometimes heated debate.
IT LOOKS LIKE JUST MINUTES AGO JIM G. POSTED ANOTHER FAKE POST, THIS TIME POSING AS MURRAY.
Jim G, I realize now that what you are saying is probably completely true as my identity has not been stolen, and all postings have been my own. One wonders what drives people to such madness. I think it is best that we meet such instances with understanding rather than criticism, in the interest of side stepping confrontation that only makes matters worse.
Of course those last 2 posts are by me. Unfortunately we have a sociopath with the maturity and mentality of an 11-year-old on this forum. Michael, please verify by emails and delete all posts claiming to be either myself or Alan that do not match our original emails.
Last post should read: Of course those last 2 posts are NOT by me. Unfortunately we have a sociopath with the maturity and mentality of an 11-year-old on this forum. Michael, please verify by emails and delete all posts claiming to be either myself or Alan that do not match our original emails.
I have no idea who Murray is but he is definitely not me. Either way I wish he would make up his mind! Is that you again Alan?
@ All. I have more to say on the topic of studies that have the same subject, but which have conflicting outcomes, and the fact that PC is rife with this kind of opposing data. Case in point: On the one side, @ John Hopkins, we have (& I quote) …truly long-term results on a large number of men who have been followed for more than twenty years Â? (after having RP). On the opposing side, there are the studies that Ed sites which leads him to state that you should leave your prostate alone Â? (which, in this case, is used in the following context (again, I quote): …my contention that PC surgeries are just as likely to make things worse Â?). The Hopkins stats are as follows: The probability of maintaining an undetectable PSA was 90% @ 5 years 82% @ 10 years 78% @ 15 years and 71% @ 20 years. So, @ 10, 15 & 20 years, there was recurrence in 18, 22 & 29% of men respectively. It seems clear to me that these figures aren ™t fabricated (as some might say) because, after all, 29% @ 20 years is no small number â€œ it is almost 3 out of every 10 patients. Patients who had to endure the negative side effects of the surgery only to have their cancer return. However, while my sympathies go out to that group, the bottom line is that almost 7 out of 10 had no detectable cancer 20 years after surgery, and I like those odds. As far as Ed ™s position is concerned, you have the above quote along with others such as: So IN MY OPINION (take it or leave it) the whole idea of PC treatment extending lives is a draw at best Â?, and you have the studies he has sited to back up such statements. Lastly, Ed has often angrily attacked the for-profit medical industry in the U.S., with claims that they only care about the bottom line and not the welfare of their patients. For some in the industry, this is true. I was a victim of one such urologist myself, who gave me a Lupron shot (which is for advanced PC) just minutes after telling me I had cancer (which was low-risk T1c). I was told it would help shrink the tumor, giving me the time to make a treatment decision. He also told nothing about the effects of Lupron in my system. I only found out the hard way, and by researching it on my own. At Lahey Clinic & Dana Farber, the doctors were shocked when I told them. Still, my point is Ed says the medical community doesn ™t care about you. It is my contention that he is just as guilty about not caring about you as some of the doctors out there. After all, how can someone care about you if they believe that a man should do nothing about his PC, not even a man in his early 50s with a Gleason score of 7 or higher? When making such statements in hopes of convincing the prospective reader, it is not his life he is risking. By contrast, there are certainly those in the medical profession that do care about their patients. I have my oncologist and Michael has his urologist just to name two among the handful of men on this website.
Like I said just like talking to a wall. One the one side we have people talking science and survival after 10 years and on the other people citing a left coast whacko who did a one year study that proved PSA levels fluxuate. It so happens that one Mr Ornish was also a close friend of Mr Jobs. If you can find him go ask Steve how those herbs and diets worked out for him. I allow myself a very very occasional small piece of skinless poultry? hahaha. Tofuti burgers? Talk about your ruined lives!
Jim G – If I can ask some personal questions and of course it is up to you whether you wish to respond. Do you even have prostate cancer? If so, what is your Gleason grade? Listen, I fully realize that I’m grasping for routes to keep my cancer in check. But I figure, if it can’t hurt, hey what do I have to loose by trying it for a while? Unlike pancreatic cancer, there is research that indicates diet has an affect on prostate cancer. Orientals, for example have a far less incidence of prostate cancer in their home countries, but when they move to the US, their rates increase substantially. Additionally, the chemical structure of soy products and some other vegetables (eg. sweet potatoes) is very similar to female hormones and is believed to block the prostate-cancer-encouraging effects of testosterone. And no, eating soy does not have any of the other negative effects of actual female hormones. I feel that if I’m going to follow AS, I need to do anything that may help my situation.
Yes I’ve made it clear that my problem is with the system … and unfortunately its usually the most naive that allow themselves to get caught up in it. Like many … Alan “believes” this system really cares about him. Similarly, I’ve found that so many people end up just “loving” their doctors — I hear it all the time. “Love” is the term they use — and the more invasive the procedures the greater the apparent love. And just like in romantic love, after you end up in bed, emotions rule … logic and reason go out the window. “I “love” my doctor.” “My doctor really cares.” “Can’t wait to see him again.” They end up looking forward to the next endoscopy or colonoscopy … or DRE … or biopsy. When you’re in love you its always a matter looking for the next opportunity to “do it again.” In our lives I’m sure many of us have come across that sad soul involved in a destructive one sided romantic relationship. Of course they are beyond help, you’re wasting your time if you try — you can only stand by and watch the inevitable disaster unfold until it all ends in heartbreak and tears. Its very understandable to that extent … and in the case of for-profit medicine … there is no more proper metaphor than the sorry clueless john who falls in love with his prostitute.
@ Murray (& all). Murray thanks for posting about your lifestyle changes. Your stats backed up by my own and the study I cited should have given Jim G. something to chew on Â?, but, of course, it didn ™t. It is commonly recognized, (including on this website under the heading: Vitamins, Supplements to Take, Foods to Avoid Â?), that lifestyle changes, including diet & supplements, possibly inhibit PC tumor growth. I don ™t believe that Jim really cares whether that is true or not. He is not on this site to engage in discourse. His purpose, in his own words, is to provide comic relief Â?, but in reality, there is nothing really funny about what he says. It is just being mean for the sake of being mean with content lacking substance, studies or facts. He is, as the old saying goes, out to get your goat Â? and push the envelope Â?. For example, shortly after Michael admonished the posters for not playing nice, Jim posted the following: Yes Michael I also need a little carification. Would it be allright to call someone a meathead or a DINGBAT? I think that while I am addressing his behavior now, in the long run it is best to ignore what he has to say. To respond to his posts is to invite more of the same, and who needs that kind of stress like you said. I, myself, need to work on that. Lastly, Murray, I posted the 20 plus year data, not only to counter Ed, but also because of this comment of yours: As mentioned, concrete 20-year data amongst Gleason 6 prostatectomy patients is difficult to find but most sites claim “over 90% success rates over 20 years” . I re-discovered it very recently in Dr. Walsh ™s book which I read four years ago. (I believe you said that you read it as well). I felt that it gave much more realistic figures over the 20 year period.
ONCE AGAIN, JIM HAS POSTED POSING AS ME – THE POST THIS TIME CONTAINING SOME REALLY OFFENSIVE AND RAUNCHY CONTENT. MICHAEL, IF YOU ARE OUT THERE, WOULD YOU PLEASE PUT A STOP TO THIS NONSENSE. THIS KIND OF BEHAVIOR IS AN AFFRONT TO YOUR WEBSITE! You are the only one who knows my true e-mail address and can easily compare it to the e-mail address used by the imposter to ID him (unless, of course, he used a fake e-mail address as well, but all you have to do is read the content of the post which begins Alan said, ON November 09, 2011 @ Murray (& all). Murray thanks for posting about your lifestyle changes Â?. It leaves little doubt it is him. THE FAKE POST BEGINS AS FOLLOWS: “Alan said, ON November 09, 2011 @ Murray (& all). One other topic that I think has gotten short shrift with respect to PC is the subject of prostate self exam.”
Alan your concerns are the same ones raised by my urologist. Long-term data is frustratingly difficult to obtain and it is even more difficult to assure that one is making an “apples to apples” comparison. However, here is what I’ve come across: According to the Klotz study 23% of untreated Gleason 6 patients died after 20 years. As mentioned, concrete 20-year data amongst Gleason 6 prostatectomy patients is difficult to find but most sites claim “over 90% success rates over 20 years” . The most concrete data that I could find was a 15-year study presented to the Journal of Urology which quotes: “0.2 to 1.2 percent of prostate cancer specific mortality among Gleason 6 patients” . In other words about a 99% 15-year success rate. (Somehow seems too high to me.) http://prostatecancerinfolink.net/2011/01/21/projection-of-15-year-prostate-cancer-specific-survival-after-radical-prostatectomy/ So if the data is correct we have perhaps a 77% PCSM 20-year survival rate for Gleason 6 patients following AS versus perhaps a mid-90% survival rate amongst RP patients. So then the question for us is whether those extra odds are worth the potential price regarding quality of life. Then I wonder if it may be possible to stack the odds a little further in our favor by following a healthy diet and perhaps, if Ed is correct, avoiding biopsies. But this raises a big problem. I’m already having trouble finding a urologist who will even accept that I follow AS. I suspect that there isn’t a urologist on the planet that will agree to monitor an AS patient without biopsies. The other problem is that, on a personal level, I don’t think that I can comfortably follow AS without in some way monitoring the cancer. I’m currently checking out reports that MRI-S can accurately indicate prostate cancer, but the problem is that I don’t think this technology can indicate the Gleason grade. Technology definitely needs to produce a reliable alternative to biopsies.
” When the facts change, I change my mind. What do you do, sir?” So this is for Michael about the comments he posted from his oncologist about circulating PC cells after biopsy. I dismissed them offhand at first because it sounded incredible and I still don’t believe there are any biopsy studies. But I wondered about circulating PC cells and asked my urologist friend about it and he referred me to this study. So I must now admit that I was wrong –there apparently is a way to measure circulating PC cells! What I found is unbelievably intriguing. Although it doesn’t change my thinking at all about present protocols, it does suggest a possible better way forward in PC diagnosis AND it does support my contention that PC surgeries are just as likely to make things worse. An excerpt: ” … a potential risk for haematogenous spillage of prostate cancer cells during tumour handling has evidenced a 30 â€œ80% rise in the rate of circulating peripheral prostatic cells at the time of radical prostatectomy procedure during which the prostatic blood flows straight into the systemic circulation without any possibility of pedicle ligation. Among these circulating prostate cells, the presence of cancer cells with capabilities to further develop metastatic foci cannot be ruled out. Hence additionally to the spontaneous prostate cell spillage inherent to the natural history of cancer, a mechanical spillage may occur during surgery. An unresolved issue, that seems important to surgeons, remains to know whether surgical manipulation of malignant tumours could promote haematogenous spread of tumour cells and further increase the incidence of distant metastasis.” http://www.nature.com/bjc/journal/v100/n4/full/6604912a.html This study found no increased risk of PC recurrence after 5 years due to surgery … and we all know that metastasis can take longer than 10 years to appear. But the most interesting thing about this study for me is that it found that men with the highest circulating PC cells before surgery had the worse 5 year outcomes. I don’t know what that means. You would need large studies of large numbers of men to be able to use this parameter as a prognostic indicator — both in treated and untreated men. I have a feeling the test just isn’t cheap or easy to do. If you are able to get through this report you will get a sense of how there are so many unknowns with respect to the understanding of PC. Right now I don’t know how I would use this information. I would have loved to have seen a watchful waiting control arm of men with high circulating PC who were not treated — to see if their 5 year outcomes were as bad as those treated. I hope someone is doing that study. It begs the question: Why isn’t this being used? More than half of men who have circulating PC cells before surgery had their PC recur withing 5 years post op! That’s HUGE! I would certainly want to know that number if I were considering surgery. It begs the question: What about biopsies? … all of these men had biopsies. What was the effect of the biopsy on circulating PC? The study Michael’s oncologist referred to could have been done here but it wasn’t. I wonder how many men having “cut it out” surgeries know that they may already have PC cells circulating in their bloodstream and that surgery will only add more! So much for Alan getting surgery just to keep his cancer from metastasizing. The factors that influence whether or not a PC becomes metastatic are most probably also systemic, i.e. having to do with your overall whole body health and a myriad of as yet unknown metabolic factors, not only with what is going on in the prostate itself. LEAVE YOUR PROSTATE ALONE!
Murray: your reference to the Klotz study interested me, so I pulled it up. After citing the 23% mortality rate for no treatment, Klotz goes on to say that 10% mortality might be the more accurate figure when you consider the change in calculating Gleason scores over time. He goes on to say the following: “The conclusion is that about 80-100 radical prostatectomies would be required for each prostate cancer death averted in favorable risk disease. Correcting the Connecticut data for grade migration, as referred to earlier, would increase this even further.” Klotz further states that the period of time that “death is averted” is of course limited and therefor the procedures are of “dubious value.” I’m not questioning your references because they are accurate as far as they go, but I thought this put it in a different context. Thanks.
You tell em Brucie. Although I think you’re talking to a wall because somebody else has already been there done that. You just aint going to get through to somebody like that with logic and reason and all the studies in the world. Imagine that! Mr Murray conveniently overlooks the fact that it takes 100 surgeries to avoid one death! He probably skipped over that part because it conflicted with his tried and true beliefs as taught to him by his numerous new found pampered friends. Its nice to have a diligent fact checker on board and I certainly appreciate it even if certain people probably don’t. Thats interesting stuff about the circulating cancer cells and even if nobody else is I’m still waiting for those biopsy studies that someone else seems to have conveniently forgotten all about. As another matter of fact I don’t know why Mr Ed is bothering all over again with somebody who shall be nameless in the interest of civility, who just believes the same kind of things out of thin air. Things like that you can lower your PSA levels with weight loss. I’d like to see that study too but think I might have to wait forever. Cheers.
Jim G, it seems as though you are going out of your way looking for conflict. Sure we on this forum may disagree on some points, it would be amazing if we didn’t. But do you really feel that I would be following active surveillance if I was “skipping over” data that convinces me that this is the route to take? In fact, if you scroll down to my previous posts you will see that I also posted the same quote that Bruce just posted. Bruce – You make a good point. If the mortality rate is really 10%, that makes active surveillance for Gleason 6 men within the same ballpark as surgery.
One such study correlating PSA & lifestyle changes: Scientists from five American research centers joined forces to study lifestyle therapy for prostate cancer. The trial, conducted in San Francisco, was headed by Dr. Dean Ornish, a nutrition expert, and Dr. Peter Carroll, a noted urologist. The program included four elements: 1) Diet 2) Supplements 3) Exercise 4) Stress Reduction. Summarizing, the study reported the following PSA findings: Initially, the treatment and control groups had identical PSA levels, which averaged 6.3 ng/ml. At the end of the year, a small but significant difference was evident. The average PSA in the intensive lifestyle group fell to 6 ng/ml whereas the average PSA in the untreated men rose to 6.7 ng/ml. And tests of how the men ™s blood affected the growth of prostate cancer cells showed similar changes. Blood samples from the lifestyle treatment group inhibited prostate cancer cell growth by 70%, while samples from the control group inhibited growth by only 9%. Lastly, It states the following: The fact that six of the untreated men, but none of the men who underwent lifestyle changes, required conventional treatment within the first year is another hint that intensive lifestyle treatment may be clinically beneficial. Lifestyle therapy did produce an average weight loss of 10 pounds since obesity is a prostate cancer risk factor, weight loss could play some role.
To be fair, here is the other side of the coin: (Just another one of many studies on the same subject that have conflicting data, where each side could point to the data to make their point. This fact is lost on some people on this website. PC is rife with this kind of opposing data). In a study published in the journal Cancer, the researchers found that obese men had lower levels of a protein (protein specific antigen or PSA) used to screen for prostate cancer risk. As a result, an obese man with a slightly elevated PSA might be at higher risk for prostate cancer than a man with a similar PSA at a healthy weight. This study concluded the following: The research, however, has shown more conclusively that obesity increases the risk of dying from prostate cancer. For example, one study reported that obese men had a 20 to 34 percent increased risk of prostate cancer death compared with men at a healthy weight. Also, excess weight has been found to increase the risk of developing a more aggressive form of prostate cancer and a greater chance of the disease recurring. @ Murray. In regards to your having difficulty finding a urologist who will support your AS without a biopsy, I myself use an oncologist for AS advice. He is also at a different hospital than where I go for monitoring my PC. That way his hospital has no stake in the advice he gives and he is aware of that.
Hi Alan – regarding your post on the Ornish study, I’ve been following an Ornish/Milken style diet since my diagnosis. The diet is mostly vegan but I do eat some fish and very, very occasionally (perhaps once a month) a small piece of skinless poultry. Lots of soya products – eg. vegie burgers and tofu. I also take turmeric, green tea with a little saffron and pom juice daily. My PSA dropped from 7.4 to 5.54 after 3 months on the diet. Almost a 2 point drop! I’ve also lost about 7 pounds, which puts me at an ideal weight and I feel very healthy. I also agree that avoiding stress is extremely important, which is part of the reason that I do my best to side-step online confrontations. However, while my urologist thinks the drop in PSA is good but is not impressed enough to believe that AS is appropriate for someone my age (52).
Alan. OK … it’ll be difficult but I’ll try to answer without sounding too flip or dismissive. But if this is really you and you are “surprised” by what I said in my last post — you are telling me that that’s exactly how you have approached all of my posts. You either haven’t read or you haven’t understood anything I have been saying (including my last post) I have referred to these men I have personally known in greater detail in previous posts. They were “survivors” and by definition a survivor is someone who was TREATED. They were diagnosed “early” based upon Gleason 6 biopsies based upon elevated PSA’s and they were treated with RP. Both later suffered biochemical relapse (a recurrence of PSA) and were subsequently diagnosed with bone metastasis and were TREATED again and they eventually died. They were TREATED and they died of metastatic PC 14 and 15 years later! They weren’t “cured” and their cancers didn’t metastasize because they did nothing. They did SOMETHING, they got TREATED. I haven’t asked anyone to accept and believe my survivor “story” about my friends. I provided medical journal case studies to show that it does happen. My reading of the evidence says that your cancer is MORE LIKELY to metastasize by the time you are 61 if you are if you are TREATED … not IF YOU DO NOTHING. Of course your PC may still spread if you do nothing. No one really knows what every “trigger” of cancer metastasis may be … but my argument is that there is enough evidence that PC surgeries contribute to rather than detract from that risk. My argument is that biopsies also increase the risk of metastasis and I have offered a number of references in previous posts to support that argument. My argument is that both of these invasive inflammatory procedures INCREASE the risk of metastasis. I have no data to quantify that risk. I don’t know if its one in 1000 or 1 in 10,000. The risk from surgeries is obviously greater than the risk of biopsies. But my opinion is that either risk is probably much greater than the risk you have if you left an otherwise indolent pc alone (i.e. do nothing). The recent study finding that men surgically treated for BPH have a 12 fold increase in the risk of dying from PC only adds to my argument. Now you might somewhat intelligently ask : “If what you are saying is true then where in the hell are all the dead men?” All these unnecessary PC surgeries these last few years should have INCREASED the PC death rate … right? ” Here’s where the “somewhat intelligent” part comes in: WRONG! I have also been adamant in my view that this risk is very SMALL — AND and that the real risk of dying of PC is also very SMALL. The differences are lost in the noise of the data. I even went out of my way to say that the “real” risk is so small that I myself wouldn’t hesitate to have BPH surgery if I needed it. My friends lives may have been shortened by their treatment … I don’t really know … and I do concede that for every one like them there may be a man who’s life has been extended — but is isn’t 10 or 50 other men. My other point here has been that there are very few studies beyond 10 years …. so men like my friends are not even being counted … nor are their true causes of death probably being accurately reflected in PC mortality rates. So IN MY OPINION (take it or leave it) the whole idea of PC treatment extending lives is a draw at best. A push. And meanwhile lots of men are being harmed. My friends were screwed twice — 15 years of misery in diapers and in and out of doctors offices as cancer patients the last years of their lives — they thought it was all worth it because they were “cured” — and then they were “killed” by PC anyway. They had, and you probably have, — most people’s intuitive but faulty understanding of cancer treatment: I have PC, I “cut it out,” my PC goes away. NO it doesn’t. Intuition doesn’t apply here. The lobby against the new USPSTF recommendations panders to this ignorance of the general public about the statistical bases of modern medicine. Just as 50 year olds will continue to drop dead from heart attacks no matter how many meds they take … men with PC who have had treatment, regardless of how early it was detected, will continue to die of PC every day. My reading of the evidence says that whether or not treatment for pc extends your life in the long term is a 50/50 proposition at best. No better than the flip of a coin. BUT the price you have to pay to play isn’t worth it. Not even close! The USPSTF knows this. They are independent doctors and scientists and intelligent educated people who have absolutely nothing to gain from their recommendations. You wouldn’t be in the mess you’re in now if you had listened to them.
Alan. You were equally dismissive of my father’s own case study. The only reason I brought it up was to say that if PSA was around when he was in his 50’s he would have probably been diagnosed just as my brother was and you were and millions of men have been. He probably would have been treated and probably never would have made it to 89 because of surgically or biopsy induced metastasis. And he would have lived whatever years afterwards in misery as a cancer patient and a survivor. Instead he was left alone — he did NOTHING — luckily he was following the USPSTF recommendations without even knowing it … and unlike you and my brother and Murray and his survivors and millions of sorry men put in the same position — he had 30+ extra years of cancer free life! Instead he was given a PSA when it came along at age 85 and he got his obscene cancer diagnosis then and only the last 4 years of his life was ruined. And he didn’t even die of PC (probably thanks to all those great treatments he received).
Very few details as to the PSA result and Gleason score which led up to this decision: Derrick Hall, prostate cancer, 42 years old. I would be surprised this does not get alot of attention given his young age. http://msn.foxsports.com/mlb/story/arizona-diamondbacks-ceo-president-derrick-hall-to-undergo-surgery-for-prostate-cancer-110211
Tony I predict he’ll live 5 years if he survives the operation! Here’s another from todays news: “Singer Andy Williams announces he has bladder cancer.” I’ll lay 100 to one odds that a check of his medical records will show that he was diagnosed “early” and treated for prostate cancer. He has metastatic PC to his bladder due to his biopsy or his RP — or he has primary BC thanks to radiation treatments. He, like Steve Jobs, would have been better off if he had never known. Early detection doesn’t save lives, it ruins them. Yes … Williams is probably another “5 year survivor” and one of the statistics that help “prove” PSA is working to “save” lives. His eventual COD will be listed as bladder cancer — further skewing those oft cited life saving benefits. Strubie, thanks for that great citation, I hadn’t seen it before. I would only add that while insulinomas are mostly benign — again like PC — they are not all created equal with respect to metastatic potential. Because of that I do not necessarily agree with Jim G — while sooner might always be better, surgery, as well as a biopsy, could be a “trigger.” Some tumors are just better left alone. The pancreas is located in the proximity of several vital organs, interacts with them and performs a multitude of necessary metabolic functions throughout life. A tumor there is much more likely to have rapid metastatic capability than one in an organ that has long outlived its singular reproductive usefulness. I know from “survivors” I have personally known as well as case studies I have presented here, that slow growing PC can take 10 – 20 years to show up as metastases in other organs — so much for highly touted “5 year PC survival.” But I can understand how anyone, esp someone like Jobs, once something unknown was found on a scan, would want to know definitively ASAP if he had the more common fatal form rather than wait around to see if symptoms of a rare one in a million tumor ever developed. In this case study the authors are arguing that the diagnosis was already a done deal and the biopsy was redundant — and it certainly caused a lot of harm.
@ Ed (& all). I just read your post and cut & pasted this from it (frankly, I was surprised to read it): “I know from “survivors” I have personally known as well as case studies I have presented here, that slow growing PC can take 10 – 20 years to show up as metastases in other organs…” . Here’s my problem. Take, for example, a 51 year old with PC (which is when I was diagnosed). If he does nothing about it, he could metastasize by the time he is 61 according to your very own data. That adds up to a pretty short life compared to one he could have had if treated. I am being matter-of-fact and civil here, so I would appreciate you being the same in your response.
Here’s something else interesting I found in surfing the web that supports Ed’s remarks about Steve’s Jobs biopsy under the title: Is a DiagnosticTissue Biopsy Always a Good Idea? http://www.contemporarysurgery.com/pages.asp?aid=321 Written by Mayo Clinic doctors in a medical journal of surgery. It says Ed was completely correct that a biopsy was not required for his diagnosis. It says that a diagnosis can be made by symptoms and blood tests. It implies that Jobs had no symptoms. It implies that Jobs had the biopsy because his tumor was detected earlier by the routine scan and he and/or his doctors wanted to know what was on his pancreas. It says that inflammation is a bad actor in biopsies. The final sentence says: The moral of our patient ™s unfortunate story: Be careful where you stick your biopsy needle. Â?
Yes of course in perfect 20/20 hind sight Mr Jobs would have to say he regrets not having the surgery sooner LIKE MAYBE ON THE SAME DAY like they do in China where all his factories are.
Lets get back on topic. The subject of biopsies has peaked my interest and as I’ve said I am now extremely hesitant to get another one especially in light of these new recommendations that say I should never have gotten a PSA in the first place and I wouldn’t be here now if I had followed that advice. It appears that not much research exists to support either safety or danger. Please consider and comment on one report I did find: Evidence has been found of metastatic dissemination after core needle biopsy in an in vivo model of human tumour metastasis, researchers reported in a poster presented here at the Annual Meeting of the American Association for Cancer Research. Several studies have demonstrated tumour cell displacement along needle tracks and into draining lymph nodes following core needle biopsies, but the clinical consequences are a subject of ongoing debate. Lead study author Carmen Giacomantonio, MD, Associate Professor, Department of Surgery, Dalhousie University, and Chief of Breast and Adult Surgery, IWK Health Centre, Halifax, Nova Scotia, explained: “The reality is that the core biopsy probably does result in significant clinical metastases in a small percentage of patients. The problem is that it’s impossible to know — it’s not detectable statistically in clinical studies because the endpoints are crude. “The results, presented on April 13, demonstrated that core needle biopsy significantly increased overall metastatic burden in a number of distant organs, such as the liver, lung, and brain. “But in cell lines that had a highly significant metastatic potential, the biopsy had more of a significance on them. So in essence, what we’re looking at is a small percentage of tumours that already have a highly metastatic potential, and we are influencing this potential by the core biopsy and the biological response to core biopsy, which is essentially a healing response.” Experimental results support clinical reports of tumour cell displacement into lymph nodes following core needle biopsies. Presenter and co-author John Lewis, PhD, Assistant Professor, Department of Oncology, Director, Translational Prostate Cancer Research Group, University of Western Ontario, London, Ontario, said, “This is not to strike a fear in anyone but is a caveat. Next, we need to know what is causing the migration and the next step is to find out the mechanism. Is the needle itself displacing the cells into the vasculature?” Dr. Lewis said that they will look at using a localised therapeutic, such as docetaxel, applied to the region to prevent cells from migrating. Plans are also in the works to do a microarray analysis to see if any genes are being turned on by the core biopsy procedure in areas of angiogenesis, inflammation, and migration.
Gentlemen. My original idea for this forum was that it be free and un-moderated. As a journalist by trade, nobody could be more of a free-speech advocate than me. But when I see the quality of the discourse degenerate, I am tempted to intervene. I have no quarrel with a vigorous debate on the issues. I do have a problem with personal attacks and profanity. So, please remember that this forum is for gentlemen (and ladies) to debate very serious issues â€? issues that are life-threatening for many of us, and it doesn’t get much more serious than that. The kind of behavior I mentioned above is unworthy of this discussion. I want everyone on this forum to conduct themselves with courtesy, politeness, mutual respect, and moderate language. That is, I want civility. If not, there are alternatives. I could make this a moderated forum, where each post has to pass by me before it goes public. I could block posts, or even ban certain users if they repeatedly misbehave. I don’t want to do any of those things but will, if I have to. Here’s a simple guide: if you are talking about the issues, it’s probably okay. If you are talking about the person who gave an opinion on the issues, it’s not okay. “I strongly disagree with your opinion and here’s why” is fine. “I strongly disagree with your opinion and you’re a jerk” is not fine.
Strubie: thank you for this very interesting material re: biopsies, which dovetails with an earlier submission about Chinese doctors believing that if biopsy is necessary, the follow-up surgery has to be conducted as quickly as possible, because of the danger of metastasis. All of this information makes it even more irresponsible for urologists to not outline all the risks of biopsy. In my case, the urologist literally spent five minutes with me, which included the DRE (normal), looked at the psa results, and said “we need to do a biopsy” without saying a word about the potential risks. Nothing. He left me with an assistant to schedule the procedure, which I never did. From what I know now, this seems like malpractice.
@ Michael. I would appreciate it if you could please weigh in on the following. I am all for civility, but I need some clarification on two points (& it may help other readers that post as well). Whatever you say in your response, I will abide by. First, if someone posted Michael Lasalandra said Â? and it wasn ™t you, wouldn ™t that make you upset, and wouldn’t you want to do something about it? I would appreciate it if it could be brought to your attention since you have the e-mails of those posting. You could verify who the imposter is, and IMO, that person should be expelled from the site. Secondly, as you said yourself, this is a life threatening issue. Of course, the very nature of the site involves those who post attempting to sway the decisions to test & treat made by the readers. If you were a Gleason 8 (at your age for example), and someone was trying to get you to say no to treatment now & in the future, wouldn ™t you want to know that the person trying to convince you actually believes in no testing and/or treatment for any cancer, not just PC? IMO, to point that out is important to the overall decision making process. Guidelines for conduct are helpful, and I agree that this site needs that. However, things are not always black & white, so I ask for your feedback one more time. Thank you!
Yes Michael I also need a little carification. Would it be allright to call someone a meathead or a DINGBAT?
Yes Bruce I was treated the same manner by my urologist. No risks were explained except for infection and that was presented as a rare occurrence, not 5%. I believe Jim posted the reference to the way biopsies were done in China and it seems to me it would be a better way especially if a hi grade pc was found. I found this on a doctors blog and its also something I was not aware of: Why do I have to wait three months after prostate biopsy to have a prostatectomy? Answer: More commonly, secondary to the [biopsy]trauma to the area and the spaces that separate the prostate and the rectum Â? there is an inflammatory response of the body to heal Â? the area after the biopsy. This inflammation response varies and can be minimal or dramatic. This in turn affects the tissue plane between the rectum and the prostate. Surgeons love pristine undisturbed tissue planes. (That is why you don ™t often of urologist removing a prostate after radiation. It messes up that tissue plane related to Denonvilliers and can wreck havoc on the dissection and increases the likelihood of dissecting into the rectum Â? a surgical nightmare. We speak of not having a tissue plane as scarred, adherent, or dissecting through concrete. Â? It is very deflating to a surgeon to have a patient under anesthesia and it is determined that the dissection will be difficult because of the above. A one hour procedure can turn into a three-hour one, and with increased chances of complications. So Â¦back to the question Â¦. ™Why do I have to wait 6 wks to 3 months to have my prostate out? Â? Because we are waiting for the inflammatory response of the body in and about Denonvilliers fasia to subside and make our job easier to remove the prostate. It is possible that in removing the prostate one could get into the wrong space Â? particularly if it is adherent, and then enter the rectum. That is bad, because all the bacteria in the rectum is now in the area of prostate. Man what a mess. Knock on wood Â¦.this has not happened to me Â¦.yet. Bruce, some previous poster also talked about scarring after every biopsy and it all seems to imply that all the repeat biopsies involved in AS can make any eventual removal surgery more difficult. For me its better to know than not to know and I wonder how many on AS are aware of all this.
OK Murray … I’m convinced … there truly is no hope for the hopeless. This is only sad. Everyone and their brother knows and everyone with a half a brain knows (sorry Bruce) … that the DRAMATIC improvement in 5 year pc survival just cited by Murray is in no way due to improvements in TREATMENT — but its simply due to much earlier detection because of PSA testing (and precisely because so many people like Murray have been “diagnosed” about 30 years earlier than they would have been without PSA testing). Sad. Sad. Sad. What ever happened to no child left behind? To think … here I was seriously trying to teach Murray a little about statistics and he goes out of his way to reveal to everyone that he is definitely “not smarter than a 5th grader?” Yes Murray … your posts make the most sense … to people like Alan. Could I interest you guys in a little Prosta-Q? How about Prosta-Max? What about Prosta-Response? Or maybe Prosta-Strong? Prosta Plus? Nothing could top my all time favorite Prosta-metto? OK now I’m a true “believer:” You just can’t save someone from themselves.
Yes, as I went to bed last night I did consider that those stats may simply indicate early detection rather than life expectancy. However, I think it is generally agreed that life expectancy has increased for prostate cancer patients. Here are some stats from one of the forums: ………………………………….. SEER Database. U.S. Prostate cancer mortality rate. All races included.* ………………………………….. 1992 39.2245/100K 2008 22.8198/100K Varience: 16.4047/100/K ,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,,, 16.4047 x 100/39.2245 = 41.82% reduction in prostate cancer deaths. Male life expectancy increased from 72.3 years to 75.3 years** ………………………………….. *Mortality source: US Mortality Files, National Center for Health Statistics, CDC. ………………………………….. Rates are per 100,000 and are age-adjusted to the 2000 US Std Population (19 age groups – Census P25-1130). …………………………………… ** CDC – U.S. Life Tables 2003 ………………………………….. Listen, I agree that all the testing has not made that much difference in total life expectancy. I suspect that the life expectancy of both older men (over 80) with any Gleason diagnosis and younger men with a low Gleason score has not changed that much. I suspect that the difference would especially come from younger men (40-70) who are diagnosed with a high Gleason score. This is a relatively small group and likely does not make a huge dent in the statistics. However, in my opinion treatment can make a huge difference in the life-expectancy of a 50ish Gleason 8 patient. The fact remains that you are advising young men with high Gleason scores to forgo treatment and I don’t think you have any data, or medical backup whatsoever, that supports your view that younger men with advanced prostate cancer will live just as long without treatment.
P.S. Sorry for the jumbled way those stats came out. Unfortunately it’s hard to format on this site. I’ll place them one more time, but I’m not sure if they will be any more readable: SEER Database. U.S. Prostate cancer mortality rate. All races included.* 1992 39.2245/100K 2008 22.8198/100K Varience: 16.4047/100/K 16.4047 x 100/39.2245 = 41.82% reduction in prostate cancer deaths. Male life expectancy increased from 72.3 years to 75.3 years** *Mortality source: US Mortality Files, National Center for Health Statistics, CDC. Rates are per 100,000 and are age-adjusted to the 2000 US Std Population (19 age groups – Census P25-1130). ** CDC – U.S. Life Tables 2003
Ed seems to say it definitively…..PSA testing saves lives: “the DRAMATIC improvement in 5 year pc survival just cited by Murray is in no way due to improvements in TREATMENT — but its simply due to much earlier detection because of PSA testing (and precisely because so many people like Murray have been “diagnosed” about 30 years earlier than they would have been without PSA testing).” Indeed many men (the 30 year group) are treated unneccesarily, but many aggressive cancers are caught earlier. I suppose in simple math terms my question would be how many of the 85,000 (I believe this is the number) prostatectomy’s, etc, etc a year DO NOT account for the 16,000 deaths averted?
Murray stop putting words in my mouth. I’ve said repeatedly on this cite, these are exact cut and paste: ” No one knows if someone with a Gleason 8 > or < X% in X cores that is treated will live longer than someone not treated because everyone is treated and there will never be a control group.” Let alone the simple fact that EVERYONE with a Gleason 8 has potentially been made worse off by the biopsy that led to the diagnosis. Dr. McCauley in the best ever article on pc ever written : “there is no acceptable evidence that any current treatment of cancer of the prostate improves mortality.” The Merck Manual: “Patients with well-differentiated cancer do just as well with or without treatment, and those with poorly differentiated cancers tend to do poorly with or without treatment. “WHAT DOES THAT SAY TO YOU ABOUT TREATMENT MURRAY? Do we have to now move from 5th grade math to 5th grade Reading Comprehension?
And as far as your statistical “proof” is concerned — I’ve already explained in great detail in previous posts why 1992 is a bogus starting point and also why all prostate COD statistics are suspect because men who have had their prostates removed and who die of metastatic pc are just as likely to have the their death attributed to lung or bone cancer.
I take a little vacation from my site and now my head is spinning. Lots of good stuff here. I can’t reply to each case but let me say to those who are interested that Bostwick Labs is highly respected. In fact, I have sent my biopsy results there for second opinions. My medical oncologist who supports my AS 100% thinks he does a better job than Epstein at Hopkins. Not sure about his new analysis technique, however.
@ Murray (& all). Ed ™s views on no testing and treatment for any PC are just part of a larger picture. The following are three of his quotes from this website: 1) …don’t get me started on colonoscopy or skin cancer Â?. 2) If you know a breast cancer “survivor,” and who doesn’t … it ™s much more likely than not that they’ve been treated for nothing Â?. 3) I contend that there’s a good chance he (meaning Apple founder Steve Jobs) might be alive today IF HE HAD NEVER KNOWN. Â?. I think it is pretty clear that Ed ™s advice to anyone would be to not be tested for any cancer, no matter how aggressive. He has never come out and said: No, that is wrong. I do believe in testing for this cancer or that cancer. Go ahead Ed. Fill in the blanks. What cancers do you believe that you should be tested for? I am still waiting for you to prove me wrong. Also, if you look deeper, a pattern emerges. (I didn ™t want to go here, after all you shouldn ™t really attack someone on a religious level, but Ed did, so as far as I ™m concerned the territory is fair game. He states: Subjecting kids to religion from birth is itself child abuse. These scandals and others not yet uncovered would never have happened had we enacted laws that forbid anyone under 21 from entering a church Â?. (Note: for the record, I am an agnostic, which is someone who doubts the belief in God. So, I have no religious axe to grind with him, and I apologize if bringing this up in this forum is considered inappropriate to some). However, THE PATTERN IS CLEAR. ED IS A TEXTBOOK EXTREMIST. Also Murray, as much as I appreciate your posts, I am amazed how many times you have thanked Ed, directly or indirectly, for expressing his opinion on this topic. Ed, in turn, has never said anything nice to or about you. In fact, it is just the opposite. He is consistently critical and often openly hostile to you. I think complimenting Ed is akin to feeding a stray. It keeps him coming back for more, (despite the numerous times he has said that he is leaving the site for good. Give that a rest Ed. It has become a big joke. Go or stay, but don ™t keep saying you are going and come back). IMO, As long as you continue to be complimentary, he is going to continue to believe that he has a chance to convert you. Anyway, at this stage, the whole topic is getting old. You have made your side very clear and so has Ed. What more is there to say? The back and forth is a lot like Archie Bunker & Mike Stivic. Neither one of you is going to change the other ™s mind at this stage. (Still, I understand Murray that as long as he continues to spew forth his philosophy, someone like you needs to be there to counter it. So, I do not believe that you should stop unless he does. I only hope he does stop, (but I sure won ™t be holding my breath). P.S. It is not necessary to tell me that you have learned from Ed. On the positive side, he has taught the readers of this site to not blindly accept the opinion of their urologist, oncologist etc., but, on the negative side, as you said yourself, his opinion about no testing & no treatment for all can be and is dangerous.
Sorry to disagree again but I’ve always found Ed’s posts to be particularly knowledgeable and backed up by factual references. So much so that I have decided I will probably never have another biopsy. Ed is obviously as opinionated as you appear to be but his anger is also obviously directed at for-profit medicine as it is practiced in this country. His introduction of other cancers and treatments, equally backed up by facts, seems to bolster his PCa arguments rather than detract from them, at least for me. You can be sure I will be asking my own doctor about a FOBT rather than a colonoscopy. Almost everyone I know is taking Lipitor. I found that heart risk calculator particularly interesting and honestly never understood the principles of how the blood pressure medication I’ve been on for years worked to reduce risk. I thought it helped everyone. I wonder if your obvious animosity towards him is only being directed at the “bearer of bad news.” In much the same way that survivors are angrily protesting the proposed new U.S.P.S.T.F recommendations. But right now I am curious about Michaels Prostavision results.
Alan, I like unorthodox views that challenge conventional thinking whether it be in finance, health care or politics. So my appreciation was sincere on that level. ED has presented some fairly interesting data can be useful for anyone considering AS. However, I didn’t fully realize how far-reaching his views were on the topic. There is fairly clear evidence that Gleason 8 cancer is extremely prone to metastasizing and there is also very clear evidence that men with Gleason 8 who are treated often have a fairly good outcomes. It is also known that untreated metastasized prostate cancer usually leads to a very unpleasant death. So of course, there will never be a control group just as there will never be a control group for leaving colon cancer in place. It’s just too bad that Ed ruins what could be a fairly thought-provoking contribution by pushing things a little too far.
Keep trying Murray. One of these times I’m going to be able to say “good try.” But this isn’t one of them. Your analogy isn’t even apples and oranges … its apples and elephants. A better one is poorly differentiated pc and glioblastoma. Both with extremely bad prognoses and both universally treated (no control groups). The question is not a “cure” as it is in colon cancer — its “survival time” post-treatment. No way to know. Desperate people seek desperate measures … and for profit medicine obliges. Most people like you have been convinced that “treatment” has to help. Thats why they call it treatment. My argument is nobody knows. And it isn’t much of a reach for me to conclude that more often than not, in cancers like these, it shortens survival times rather than extends them. Last year we finally got a little scientific proof of that concept: “Palliative Care Extends Life, Study Finds” http://www.nytimes.com/2010/08/19/health/19care.html. Actually extends life about as much as Avastin. But then again not as many people making as much money on palliative care.
As far as anyone bringing up the sexual abuse of children by religious authority figures who do more than take a “do no harm” oath” … some people seem to have a strange obsession with defending ass screwing in whatever manner it might occur.
Whoaaaaa! Sounds like Alan’s gone over the deep end. talk about a rambling man. Brain metastasis anyone?
Strubie – I think the issue is fairly simple, and all the side-issues are nothing more than smokescreens. The issue is simply whether it would be wise to ignore higher Gleason cancers, especially if one has many years ahead of them. If your cancer ever progresses to Gleason 8, I wonder if you will still take Ed’s advice? If you decide for palliative care and the potential for painful bone-cancer over treatment, then that’s, of course, your prerogative. I think we all know where we stand on this issue, so we’ve probably reached the point of “agreeing to disagree” . My objective is simply to ensure that anyone visiting the site fully considers the potential impact of their choices.
Yes Murray … you and your new found friend would have everyone believe that I along with The NY Times and Stanford doctors and the USPSTF are all extremists. Murray stop saying “my advice” … I’m not advising anyone. Murray stop saying you agree that there’s a lot of overtreatment. My parents were not overtreated they were criminally diagnosed and criminally treated AND ITS NOT JUST CANCER TREATMENT. How about a different tack? Do you think its ethical that drug manufacturers advertise directly to consumers? Do you think its ethical for doctors to take kickbacks from drug or equipment manufacturers? How about this guy? How would you feel if this ass of an m.d. treated your parents? http://www.businessweek.com/ap/financialnews/D9JUIPFO0.htm WAKE THE HELL UP MURRAY! Its not people like me that are getting bogus cancer diagnoses and unnecessary stents … its clueless schmucks like you. Doesn’t this sound just vaguely familiar?: ” A landmark 2007 study published in the New England Journal of Medicine showed that many patients given stents would fare just as well without them. What was going on in Baltimore is going on right now in every city in America, Â? said Dr. Steven Nissen, chief of cardiovascular medicine at the Cleveland Clinic, who said he routinely treats patients who have been given multiple unneeded stents. We ™re spending a fortune as a country on procedures that people don ™t need. Â? Murray … this is a lot more than a little bit of overtreatment. How about Consumer Reports? Are they extremists too? Read through this blog: “Insured? You’re money in the bank to the health-care system,” http://www.consumerreports.org/health/doctors-hospitals/medical-ripoffs/overview/medical-ripoffs-ov_1.htm And just like they have people like you convinced that pc treatment works, they have the whole damn country convinced that the real problem is “the big bad insurance companies.” Insurance companies are middlemen they’ll always take their cut regardless. The only reason we pay $25.00 for an aspirin in a hospital setting and the only reason health care costs have increased every year far beyond inflation is the greed of doctors and health care “providers.” OK … I may be an extremist … but Murray … you’re a schmuck (and one thing I do agree with your new found friend is that you’ve been too nice to me).
Ed you may have missed it but none of the rest of us have. Murray often refers to you as ED rather than Ed and I think he is trying to imply that extremism is not your only problem.
ALERT!!! THERE IS AN IMPOSTER OUT THERE POSING AS ME (TO OBVIOUSLY INCITE TROUBLE). THIS POST: “Alan said, ON November 03, 2011 Well you can just go and f yourself” IS NOT ME! TO POSE AS SOMEONE ACTIVELY USING THIS FORUM IS BENEATH CONTEMPT!!! Lastly, Ed you know damn well that bringing up the religious quote has nothing to do with the despicable acts of child abuse by members of the clergy. What does your statement Subjecting kids to religion from birth is itself child abuse” have to do with the clerical abuse of children? Nothing, that’s what. The quote was simply used to show your state of mind, and you are just trying to draw attention away from that fact. Now let’s end the discussion of religion. As I said, it has no place here, (except that, at the time, I felt it was necessary to make my point).
Ed – Since when are we talking about drug companies? You’re obviously the type who goes our of his way searching confrontation. Your rant doesn’t bother me, as I’ve long ago realized that people such as yourself are dealing with many more issues than I’m capable of solving. The inclination you might expect is for me to lash back, but there’s likely nothing that I can say to cause you any more pain than you’re already dealing with.
@Murray. I’ve known a number of people with brain cancer in the last few years. They were all treated and they all died. I don’t know the costs but I’m sure it was extensive. I do know the surgeries and radiation and chemo were hell for all of them and their families. Their lives may have been briefly extended but at what cost? Financially as well as physically and emotionally. Palliative care rather than aggressive treatment from the start may well have assured them a much better quality of life in their final days. Its a different story if you believe high grade prostate cancer can ever be really cured. I haven’t seen that evidence but I do concur that civilly agreeing to disagree is the only way to go from here.
By the way, I draw your attention to the fact that Ed has yet again talked over the question of what, if any, cancers he would test for. So, I am going to take his silence to mean that he would test for NONE, NO MATTER HOW AGGRESSIVE! With that I rest my case. @ Jim G. I am a believer in innocent until proven guilty, and I won’t be able to prove it was you, but you posted the immediate inflammatory response to the imposter post. Also, anyone who reads your posts knows that you’re content is generally hostile. Murray said you were immature. If you created that imposter post, then that is an understatement.
Thanks for the SPECIAL BULLETIN Al. Have you contacted the FBI yet? They have lots of experience handling complaints like this from people like you. Do you also often notice people following you on the street? Hahaha
FINALLY! WAY TO GO MURRAY! Way to lash back and defend yourself…be a man …don’t let anyone call you a schmuck and get away with it. Finally! Hopefully its a start … that might end up someday as “I’m mad as hell and I’m not going to take it anymore.” And it’ll be directed where it should be … towards the people who ruined the rest of your life with this bogus cancer diagnosis. OK … I’ll take your “advice” and go somewhere else to rant and rave and deal with all my pain. This place has descended into a circus anyway.
I can’t help but snicker out loud reading Ed’s last, last, last, last, last . . . . post. Especially the line about “degenerating into a circus” – that’s pretty rich coming from someone who has apparently made the rounds from one site to another with similar results. Obviously I could call you any number of names and hide behind cyberspace. I don’t feel the need to do that.
Murray pretty ungrateful of you to put the knife in and turn it seein as how the guy made it pretty clear he was hanging around to try and save your ass. If you remember this was a pretty civil board before Al showed up and then Michael seemed to back him up. OK let’s move on now and everybody sing along with Al/// Boy the way Glenn Miller played ///songs that made the hit PARADE///guys like us wehad it made///before PPP SSS AAAAAAAAA/// Come on lighten up. its a dismal topic. Cries out for a little comic relief. Oh and Al if you do call down to the Bureau, ask for Agent Prostametto.nice guy. Italian. He’s handling the nut case calls this month. hahaha got to love it.
@ Jim G. (& all). Jim, you have got to be kidding when you say “If you remember this was a pretty civil board before Al showed up…” Your posts have made you the poster boy for lack of civility. You have been accused of immaturity, taking the low road, being mean spirited, antagonistic, hostile, and lastly, stealing my identity, which is about as low as you can go. It is certainly noteworthy that you haven’t bothered to deny it. Instead your answer to the accusation has been to be even more of a jerk.
Alan. Those are big changes in a year. Were there significant increases in your PSA levels too? Any new PSA’s since January 2011? Did you give any thought to the idea of biopsy induced inflammation making things worse as talked about here? Mine were 2 of 12 under 5% and I feel like you did and I’m now thinking about leaving it at that and not going back. My understanding of true genetic testing is that it involves a person’s dna which can come from anywhere. I said skin but I think a saliva swab is usually what they use. Whatever Prostavision might be doing I don’t think its really genetic.
@ Strubie (& all). Here are the answers to your questions and comments: Yes, the change in biopsy results was big â€œ too big in fact. PC just doesn ™t grow that fast. Such is the failing of biopsies. My oncologist @ Dana Farber believes that it was likely a combination of using a different urologist, a change of needle placement and some progression. The problem is that, as with most everything else associated with PC, you just don ™t know. He pointed out it could have been 4 of 12 positive cores, all 45% cancerous, the whole time, and he added that there could be even more cancer than that. The only thing you know for sure is that there isn ™t less cancer than than the latest results show. (NOTE: I no longer use the urologist who did the earlier biopsies). I have no opinion on whether biopsy induced inflammation caused the tumor to grow. It seems far more likely that the change was due to the three factors already stated, but, again, you just don ™t know. As far as my PSA is concerned, I wrote this in my post on September 29th, 2011: My PSA is “abnormally normal” . It was 5 in ’07 & is now stable @ 1.5, which I attribute to a 20lb weight loss, diet changes & exercise. This still doesn’t change the fact that I have too many positive cores & too much cancer in them. In fact, I read that the PSA of 1 in 4 is not a reliable gauge of their PC. I seem to be in that category. Â? On the subject of genetic testing, I understand what you are saying, but it is referred to as genetic testing because it involves three genetic markers – HOXD3, ERG and PTEN. What more can I say than that. If you want to know for sure, there is bound to be information on them online. Lastly, I am not willing to pre-judge and dismiss ProstaVysion the way people are on this website (for reasons I have already made clear). I will continue to research its validity by reading the studies (even after my test results come back), and at this point, I believe I will leave others to do the same on their own if they so desire. I ™ve done my part in making people aware of it. They can now choose to pursue it or not. I hope I ™ve addressed all of your concerns. Good luck to all of you out there who are dealing with this cancer.
OK Murray … one last try … I’m on a mission from god … a homework assignment. Just a little addendum to all your research. Lets learn a little about the statistical basis of modern medicine. Go to: http://hp2010.nhlbihin.net/atpiii/evalData.asp — its a 10 year risk calculator. Put in these values: ( Age 52 Male Total Chol: 200 HDL Chol: 65 Smoker: No Sys BP: 200 HBP Meds: No). I think most everyone would agree that 200 is a pretty unacceptably high BP — and it shows in the results — 7/100 people with these numbers will have a heart attack in the next 10 years. So now lets take some meds and bring down that BP to 120. Put that in the calculator. What happens? Now we see that in the next 10 years only 4/100 people have a heart attack. You could say that the people who took the meds cut their heart attack risk nearly in half! You could also say that the treatment didn’t help 4 people at all. I’m certain that you … Murray … might call the 96 people who were treated and had no heart attack “survivors.” If you do … what do you call the 93 people in the untreated group who had no heart attack? Murray … the treatment helped only 3 of 100 people. There’s no way to know in advance which 3 they were. 4 people died anyway. Sorry Murray …. as hard as it might be for you and your survivors to believe, treatment for pc works exactly the same way. You need a pretty big “survivor” support group … at least about 50 guys … to say with any certainty that ONE of them has been saved! In the case of this HBP example you could call the people in the untreated group stupid. The negligible side effects of treating HBP in the people who weren’t helped are certainly worth saving those three people. In the case of PC the exact opposite is true. The side effects are not negligible. The side effects include death from the complications of both diagnosis and treatment. The scientific studies that went into producing this calculator are the same kind of studies that the USPSTF used to develop their recommendations. Go ahead play with with it. Check it out. Find out the fantastic benefits of lowering your cholesterol. Then go ask your doctor if Lipitor is right for you. (Or instead maybe … just maybe … you’ll begin see what the sham and fraud of for-profit medicine is doing to this country).
Ed – I think we’re on the same page on many issues – I agree that North Americans are often over-treated and I wish there was far more emphasis on natural healing. But where we disagree is, again, on high-Gleason cases of prostate cancer, especially in younger patients. From both personal accounts and medical data that I’ve come across, there is a pretty good survival rate, compared to many other cancers in healthy younger men (perhaps under 75, definitely under 65) with high Gleason scores (above 7, definitely above 8) who choose treatment. However, the survival rate is not good if these same high-Gleason younger men choose no treatment and their life-expectancy would likely be under 10 years and often under 5 years. To top it off, prostate cancer spread to the bones, bladder or liver is not a pleasant way to go. Now as you know I’m currently leaning toward AC because I’ve read reports stating that it is unlikely that Gleason 6 can metastasize outside the prostate. However, as the Gleason score becomes higher the cancer becomes more adaptable to spreading to other organs. I think almost any doctor, even the European ones, would agree with that. You can even check the Yana logs of the few men with high Gleason scores, who’ve tried AC and see how long they survive. So anyone with a high-Gleason score who is following your advice is literally betting their life (or more accurately many years of their life) that you are right.
Murray, help me out please. I can’t figure out what “AC” stands for. I googled “Prostate Cancer & AC” and typed “AC” into the YANA search box, but came up empty. Excellent last post by the way. (I figured a compliment would be a nice change of pace since you take so much heat from Ed and his entourage). Just know that you are making a positive difference. That is why I recommended you to Strubie when I thought he was a Gleason 8. I firmly believe that while Ed’s group makes the most noise, there are a lot more readers for whom your posts make the most sense. Thank you!
Murray: you mention “personal accounts and medical data” that show poor survival rates for those who do not get treatment with high Gleason scores. Do you have any references and studies to support this? If this is true (and we know that hundreds of thousands of these individuals have received treatment over the past decade) how come overall mortality has either not improved or improved only slightly? It seems reasonable to expect that if treatment was working that well it would show up in a fairly dramatic way over a period of years, and it’s been over twenty years since the whole psa regimen has been in place. Plus, even many doctors who support aggressive treatment seem to agree that the missing link in PC is determining which cancers pose a real threat, which suggests Gleason does not necessarily give an accurate picture of the cancer’s aggressiveness. Still, if you have studies and data, I would be interested. Thank you.
Alan – I guess it must be my clumsy fingers as I mean AS (active surveillance) not AC. I whacked myself in the forehead the last time but then I did it again. (Unfortunately there is no edit function.) Bruce – from what I’ve heard, the mortality has improved for those suffering from prostate cancer. However, part of the explanation for a low improvement rate could be that the majority advanced prostate cancers are still found in older men who are at a good risk of dying, anyway, from any number of ailments. And then also, those with higher Gleason scores have always had a higher likelihood of having symptoms or having signs of cancer show up from a DRE. So they may very well have had a good chance of having a biopsy and diagnosis even before this current rampant PSA testing. IMO, the controversy is testing and over-treating prostate cancer patients with no symptoms and low Gleason scores. As for those with high scores, to me, it just defies logic to suggest leaving a Gleason 8 cancer alone in, say, a 60-year-old man. I don’t think you could find one single doctor, no matter how progressive, who would suggest no treatment in this type of case. And I think it is dangerous to council younger high-Gleason men to follow this action. However, if a relatively young man with Gleason 8 decides against treatment then that is, of course, his choice.
Bruce -here are some 5 year survival rate data: “The most dramatic improvement in survival was for prostate cancer, from 82% in 1991-1995 to almost 97% 10 years later.” https://www.cancercare.on.ca/cms/one.aspx?pageId=41138 It is from a Canadian site, but I would imagine that American stats would be similar.
Looks like nobody here but you and me Alan. Thanks for all that that clarification about Protavysion and it interested me enough to look it up and whal I found was an impressive testimonial right up there with Murrays survivors war stories about all of them hitting the beach at Normandy. Sorry buddy but it looks like Ed might have had it pegged right on as it says as I copied it directly We believe that Prostavysion successfully addresses the significant unmet need of defining how aggressive a specific prostate cancer is, empowering the patient and his physician to make the best possible treatment decision, Â? said David G. Bostwick MD, MBA, Chief Medical Officer of Bostwick Laboratories. If the cancer is triple-positive, definitive therapy is probably preferred if the cancer is triple-negative, then more conservative therapy may be a consideration. Â? Well as one of our greatest president’s was fond of saying: There they go again! We BELIEVE. Murray BELIEVES too and good for them both but wheres the PROOF? I didn’t find any proof anywhere in sight and when somebody starts talking PROBABLY and MAY BE it sure sounds like somebody hedging their bets and maybe you’re right back where you started. What if its double negative and single positive or double positive and single negative? You’ll still be still swimming in circles. I don’t buy it either but best of luck with it all and I am now curious about what you are going to find out and I hope to God for you its triple negative. Now I want to say that I might have been a little hard on Murray in my last post and I do agree with Alan that you have been a lonely voice of reason in the AS community so please don’t let science muddle your thinking and KEEP POSTING.
Interesting discussion here re: Prostavision which I had never heard of. This would be the Holy Grail of prostate cancer diagnosis. Alan did you do any other research other than the company website? If so can you direct us to the data that shows these markers have been proven to be meaningful. Are they actually saying that someone’s Gleason 8 biopsy might genetically be a triple negative and not require treatment?
It is interesting Jim that I just got done posting this to Terry Herbert, owner of the YANA website, and I was planning to post it here even before I read your post. (Note : this also addresses Ed ™s comment about there being no guarantees, which was in one of his replies relating to ProstaVysion). So, here goes: Terry stated the following: I have not read all the studies referred to in the Bostwick page but those I have read are not exactly conclusive, referring to associations between the various tests and potential outcomes. Association is not proof. Â? I replied as follows: Hi Terry. Thanks for your post. I agree with you that association is not proof, but where is their proof in the world of PC? Allow me to site a few examples: 1) are biopsy results proof of how much cancer you have? No, they can only give you insight as results can fluctuate from biopsy to biopsy as they have in my case. 2) are Gleason results proof of how aggressive your cancer is? No, because post-operative Gleason results have been found to be different from the biopsy results. 3) are PSA results proof of cancer, or the seriousness and/or progression of your cancer? No, of course not. Not only is it not cancer specific, some like me, have a very low PSA while their biopsy shows a lot of cancer 4) are PCa3 numbers proof of cancer? Close, but Bostwick Labs states the following: If the sample is positive for PCa3, then the patient has a very high likelihood of having prostatic cancer. Â? 5) one more: is there proof that a PC Â? diet helps fight against PC progression? There is strong evidence, but the studies always point out that the results are inconclusive. Sadly, as men with PC, we live in a world of uncertainty, but as the saying goes: God, grant me the wisdom to accept the things I cannot change Â? (or something like that). Insight is, in my mind, a much better word than proof. Lacking proof, I will take as much insight as I can get. The bottom line is that for some, like me, there comes the time when you have to make that treatment decision, and you don ™t have the luxury of waiting around for the proof. Terry, if you feel I am wrong about this, or am missing part of the picture, then set me straight. I don ™t claim to be an expert and I welcome your, (or anybody else ™s) feedback. I am always willing to learn.
@ Strubie. I believe my most recent post answers your question about proof. Still, if you Google “Bostwick Laboratories” & type “ProstaVysion” into the search box, then it will take you to that part of the website that provides links to info on the subject, including 12 studies that are cited under “references” . As far as your Gleason 8 is concerned, I cut & pasted this excerpt from their website: ” …particularly in those patients with intermediate risk cancer. Â? So, I can only suggest that you get in touch with them by phone because Gleason 8 doesn’t sound intermediate to me, but you never know unless you ask. I feel for you and wish you all the best. P.S. I do suggest that you scroll back and read some of Murray’s posts. He has some experience with Gleason 8 patients and you may find words of encouragement there.
Jim – Sometimes I don’t respond because, to be frank, your posts are often rather immature. However, I sense that on some level you’re likely dealing with these issues just as much as the rest of us are. I never expressed a “belief” in Prostavysion, only an interest. Sooner or later someone will come up with a test for the aggressiveness of prostate cancer. That is the next step. Some of the older chaps in my support group have earned a great deal of my respect. After all they’ve been through they’re still significantly contributing to society and are people of obvious integrity and quality. I sincerely hope that none of us on this board have to experience a portion of what some of these men have gone through.
Strubie – If you haven’t already, I would suggest finding a support group. They can provide valuable information on treatment options and both positive and negative recommendations for medical personnel as well as someone who can relate to your experience. I hope that my last line in my previous post wasn’t overly negative – I was just trying to express that it’s not the type of situation to make light of.
Sorry if I gave the wrong impression. I have minimal Gleason 6 as most people here do. I was asking a hypothetical about Gleason 8. Sorry again but I have to say that I agree with both Jim and Ed on Prostavision. If this was real it would have to be backed up with years of clinical studies on the individual markers separately as well as in combination. I can’t find any. I am also skeptical of the genetic angle as these kinds of things are often just key words used in promotional advertising as being the latest and greatest. Just like many think robotic surgery must be better even though some studies show its worse. I’m no expert but from my understanding true genetic testing could be done using a skin sample and shouldn’t require a biopsy sample. But I wish you luck and hope you will continue to keep us posted on your experience with it.
@Murray. You want serious ok heres serious. Stop talking to your damned survivors. Survivor bias is a well known road to nowhere. Firstly they’re survivors and you don’t get to hear from all the dead guys. Second theyre all biased towards treatment and depends. Third theres no truer statement then misery loves company and thats why they are there in those groups and we’re here in this group. Fourthly unless they hand you their lab reports and medical reports its all BS. Lastly madison avenue knows theres no better advertising than word of mouth. They know you can read consumer reports about the worse car ever built and then talk to your friend who owns one and loves it and then you go buy one. If all the scientific studies say treatment doesn’t help and then you look somebody in the eye as he’s crying and telling you about how treatment saved his life and then out goes your prostate. Not a smart way to do business Murray.
Valid points have been made regarding the absence of long-term studies on ProstaVysion IF IN FACT THERE ARE NO LONG-TERM STUDIES. Has anyone commenting checked any of the 12 studies referenced on the Bostwick website to see if the studies were long-term or not? (If you have, I would appreciate a post letting me and the other readers know). I will admit that, to date, I have not, but I will and having done so, I will report back my findings in time. That being said, there are a couple of other points to be made. I understand how interest in ProstaVysion is going to be case specific. In other words, even if there are long-term studies to support having the test, some practicing active surveillance are not going to want it done. I know because I would have been one of them in January of 2010. With a biopsy result of 2 positive cores out of 12, that were 1& 11% cancerous, I was at peace. I would not have wanted to submit to a test that shattered that feeling by telling me that the cancer was aggressive in spite of the biopsy results. Today though, things are different. My January 2011 biopsy findings were 4 positive cores out of 12, which were all 45% cancerous. I finally sat down with a surgeon and, while I did not make an appointment, I had planned to in the fall or early spring, that is if there wasn ™t a breakthrough in genetic testing as I had mentioned in a previous post. So, the bottom line is when you have run out of time and you are facing the treatment that you had hoped to avoid, it does not matter whether or not there are long-term studies. You are going to grasp hold of the last hope you have. Favorable ProstaVysion results not backed by long-term studies are better than no test results at all (because then all that is left is the surgery). Lastly, the point I was making earlier is worth restating in summary. What did the long-term studies on biopsies, Gleason grading & PSA (just to name a few) reveal. Simply that while they are helpful in monitoring and making judgments about your PC, their findings are not definite yet they serve a purpose. If the long-term studies on ProstaVysion show that its results are not guaranteed, it also still serves a purpose – for guys like me. @ Strubie: genetic testing to aid in determining the aggressiveness of PC is very real. I am not talking about just ProstaVysion. You can find several articles on the subject online. It ™s just that, except for ProstaVysion, all the others I have read about are still in the testing stage. Also, when talking to my surgeon and oncologist both said that their respective hospitals were engaged in such testing. Lastly, I am no expert either, but I don ™t believe a skin sample would suffice. The test is taking a genetic reading from a piece of the actual tumor removed during the biopsy. That is how they tell whether the tumor is aggressive. It ™s a good bet that you can ™t tell whether a PC tumor is aggressive by simply testing a piece of your skin.
Murray … this guy is a doctor and also one of your survivors: “For years, Dr. Donald Layton made a point of urging other men to get screened for prostate cancer. A retired Mayo Clinic physician and prostate-cancer survivor, he was convinced the test was a lifesaver. But about a year ago, he had a change of heart. Today, he believes there’s no reason for otherwise healthy men to go looking for trouble. “I stopped going out saying everybody should be tested,” said Layton, 83. Once a cancer is found, it’s almost always treated. As many as one-third of men are left impotent or incontinent, and 1 in 200 die from complications of surgery.” You don’t have to be an engineer Murray…its a “are you smarter than a 5th grader” calculation: If 1 in 380 men will die without treatment and if 1 in 200 will die from the complications of treatment, which group do you want to join?
@ Ed. Your comment: “As for those people here pushing services or books with their own personal testimonials — there’s no way to know if they aren’t just paid shills trying to drum up business” sounds like it is referring to me so I will address it. I learned of ProstaVysion indirectly. I found out that Clark Howard, the notable financial guru from CNN and radio, had PC. Looking on his website, I found that he had a PCa3 test which currently isn ™t approved by the FDA here. Still, it is being done, and when looking in to who does it here, I came across Bostwick Laboratories. When I talked to their rep, she introduced me to ProstaVysion as the best way to find out about the aggressiveness of my cancer. So, there is no paid shill here. (I think your taking that tack is just a desperate way of trying to explain it away). Note: if you want more proof, go back to the first day I posted (September 29th of this year). I had this to say about genetic testing at the time: I have been holding out hope for a breakthrough in genetic testing, but it seems to be a case of so close, yet so far away. If you have any updates in this area, I would be glad to hear of them Â?. (I was posting To Michael: Â? at the time).
Murray Colon cancer: eminently treatable and curable. Colonoscopy on the other hand: UNPROVEN to reduce mortality. http://www.sciencebasedmedicine.org/index.php/questioning-colonoscopy/ When the studies are finally done it may just be that messing around with otherwise benign polyps is about as good an idea as biopsying an otherwise indolent pc (Cutting bleeding inflammation involved — maybe they don’t get it all).. A true story: my wife recently went to her doctor for something unrelated and minor – at the end of the visit the m.d. made a big push for a colonoscopy noting that she had just turned 50. (note: she has no risks factors, no family history etc) — since she’s been well indoctrinated by me she said no despite repeated appeals and arguments from the m.d. He finally relented looking at her like she was crazy and left it at that. Now if this ass**** was a concerned caring m.d. who was really interested in saving someone from colon cancer why the hell didn’t he next push for a sigmoidoscopy and if she still said no — go on to explain why she should at least do a FOBT (simple, non-invasive, and actually PROVEN to save lives) ? I’ll tell you why … no big profit margins! And like pc biopsies there is danger involved — and not only the risk of colon perforation — you can find lots of news stories about hospitals caught following improper sterilization procedures and exposing thousands of patients to AIDS, hepatitis etc. — and who really knows how many times that happens — nobody wants that kind of publicity and its mostly swept under the rug: http://articles.sun-sentinel.com/2009-04-18/news/0904170170_1_miami-va-colonoscopy-hiv-or-hepatitis http://legalstuff.kaiserpapers.org/soupy.html A lot of people I know come back from their colonoscopy walking around all smug that they did it and relieved that they are “colon cancer free.” They don’t want to hear when I try to tell them this: http://www.nytimes.com/2008/12/16/health/16cancer.html “Colonoscopies Miss Many Cancers, Study Finds.” Now just to top it all off for you Murray, in Australia, where they have universal non profit health care — and they are serious about fighting the cancers that can be fought — all citizens are sent a FOBT kit in the mail the day they turn 50! Keep trusting Murray. Keep the faith. You have plenty of company … most of this dumb-assed country. And I think its fittingly appropriate that two of the biggest cancer scare campaigns your trustworthy medical-industrial complex has foisted upon them involves someone repeatedly getting f****d in the ass!
Ed- In reference to your comment: ” Murray … this guy is a doctor, not an engineer … but he probably would have been a good one: USPSTF Co-vice Chair Michael LeFevre, M.D., M.S.P.H.” In fact LeFevre’s received a BS in Engineering as his undergraduate degree. Indeed he understands a little math!
Murray I’ve told you about my dad and my brother and just now my wife … want to hear about my mom? She had her first ever mammogram at 80 years old in the early 1990’s. At 80! A unnecessary mammogram that lead to a biopsy that led to a finding of “cancer. ” An innocuous little DCIS that might well have been there for 40 years bothering no one — least of all her! (Like many “cancers” DCIS is also a common autopsy finding and rarely becomes clinically significant but is almost always treated when found). That led to her unnecessary treatment and her early death as a result of that treatment (not to mention all the significant psychological distress she had to endure in her final years). Want to know how she got to have her first ever mammogram at 80? One day a bus showed up at her Senior Citizens center. “Get on the bus.” “Get on the bus.” We’re going for free coffee and donuts and yes, — FREE mammograms. Your trustworthy medical industrial complex at work! Doesn’t it make you just proud that you live in a country that takes such good care of their senior citizens? I know from talking to enough people that these same kinds of stories are being played out by the millions every day here in the greatest country in the world. The people you are so willing to trust are still PSA screening 25% of 85 year olds! Have they no shame?
Ed – You don’t have to sell me on the fact that over-testing and over-treatment happens. I think one of the worst examples may be with hysterectomies which are done far more frequently than in Europe. Where I differ in opinion is regarding your view that prostate cancer should never, ever be treated, especially when such action would leave palliative care as the only option. I don’t believe there is a doctor anywhere, whether they be in Europe or the most vocal proponents of AC and natural healing, who would support that view.
Murray … what you happen to “believe” and what the facts are … are two different things. You’re hopeless. I just realized that. But in your defense a “cancer” diagnosis, does tend to screw up a person’s critical thinking abilities. THE WHOLE POINT OF THIS WHOLE DISCUSSION FROM DAY 1 HAS BEEN ABOUT THE FACT THAT MILLIONS OF MEN ARE BEING HARMED — get ready now Murray — precisely because — SCIENCE CANNOT DETERMINE WHEN TO TREAT PC! I’ve carefully laid out my case in all my previous posts. No one knows if someone with a Gleason 8 > or < X% in X cores that is treated will live longer than someone not treated because everyone is treated and there will never be a control group. But I know where you’re coming from now … you “BELIEVE” that treatment will help, that treatment has to help and everyone treated “HOPES” it helps … sorry Murray … but that doesn’t make it so. And a panel of independent experts who I trust are about to tell us not to even bother finding out if you have that Gleason 8 pc. AND THEN ALL HELL WILL BREAK LOOSE! Yes Murray I’ll admit right here and now that there is some scant evidence that treatment works! And here’s exactly how it works: as simply as possible just for you: take lots of men, remove all their prostates, follow them for a long time and about 2% will appear to have been saved by the treatment! GOT IT! So I’m going away now … and I’m going to try to stay away. I’m going to leave on my own before Michael tells me to take another hike … and I’ll leave you and Alan here to talk about your ProstaVysion … or about your next screwi I mean your next biopsy by your trusted doctors to “monitor” your cancer and you guys can all get together and do what current science says can’t be done. (i.e. decide that NOW is the time for old Murray to go under the knife). But Murray, when that time comes … you see … the odds are overwhemingly in favor that you’ll have been treated ……………………….. oh nevermind! See ya.
Ed – All I can tell you is that I’ve met men, who were diagnosed in their early 60s with Gleason 8 or 9 that had spread to several other parts of their bodies. They are now in their mid to late 70s. In one of the cases the fellow was give 2 years to live. Now you believe that they would still be here without treatment. I don’t think that’s plausible and I could never imagine advising a person with such advanced cancer to not seek treatment.
This board is smokin hot now! Still lurking and trying to behave myself since I’ve been accused of taking the low rode too many times. Screwed in the ass. Love it love it love it. What about that one strange guy posting a while back about the the whole thing is related to sexual repression. Maybe its time for some of you guys to come out of the closet. Hahaha. Liking those biopsy’s a little too much? Ed’s not really leaving. Don’t worry he’ll be back. Then there’s Murray and his old men sitting around telling fish stories about the one that got away. Years ago it was a gleason 7 and only 10 years to live. Hahaha. You think anybody wants to admit he’s wearing depends because he made a mistake like that? Some of those guys probably believe their own baloney by now and its called early alzheimers. Takes someone special to admit something like that maybe like that Mayo clinic doctor and what turned his mind around anyway? Maybe had a PSA showing his cancer coming back but even he is not going to go that far and admit that. Lighten up.
For all those out there practicing active surveillance, I am, once again, posting this information on PROSTAVYSION, WHICH IS A NEW GENETIC TEST THAT GIVES INSIGHT INTO THE AGGRESSIVENESS OF YOUR TUMOR. (I am doing this because it seems to me that the site generally has fewer postings, and therefore fewer readers, on the weekend than during the week, and I first posted on this subject on Saturday, October 29th. I feel this information is important enough for those faced with a treatment decision, now or in the future, to make as many readers aware of it as possible). Note: I will also be posting the original context on the YANA website that Murray made me aware of earlier. On this website, for sake of space, I will only refer you back to the dates of the postings so that any interested parties can scroll back and catch up. NOTE: I am not a paid shill trying to drum up business Â? as Ed implied before I set the record straight (see my October 31st post to Ed on this subject. You will see that I stumbled upon ProstaVysion while looking for a lab that did PCa3 testing). I am simply trying to help those who, like me, are faced with a difficult decision (again, whether that be now or in the future) and don ™t want to submit to treatment before they know that they have done everything they can to avoid it. After all, isn ™t that part of what websites like this are for? I certainly would like to think that if someone else knew about this, they too would want to make others aware of it. OK, here goes (I have four posts in all on the subject, not counting this one): The original posting, as mentioned above, was Alan said On October 29, 2011 Â? and it starts off as @ Captain Joe… Â?. After that I have two postings on October 30th, one to Murray and the other to Ed. My fourth posting is the one to Ed on October 31st. (There are actually eleven total postings on the subject between myself, Murray and, of course, Ed. The other postings where Ed continues to hammer away at Murray are unrelated). For those who have this test done, I wish you the the kind of results I am, of course, looking for myself.
Thanks for passing that on Alan. If it works, it will help greatly in making a treatment (or non-treatment) decision. I’ll definitely ask my urologist about it.
Your welcome Murray. Just an added note. It is so new that it is likely that you will have to make your urologist aware of it. In my case, the Bostwick Laboratories rep did that for me, sitting down with the doctor and educating him on the test, while also letting him know that what was needed from him was simply the paperwork to get the slides released. Note: I did see a new urologist within the same Lahey Clinic system that I had already been using because she already had the doctor as a client. So, that just made things easier. I hope this helps. Good luck. P.S. I really appreciate your postings. I know that people often ask Ed not to stop posting, but, in my case, I would like to see you continue to post. You are a voice of reason in the active surveillance community, and I believe people need to hear that voice to counter the “do nothing about your cancer philosophy.” I personally thank you!
Yes Murray … and while you’re at it ask your doctor if Prosta-metto vitamins might also be right for you. (sometimes just a name is enough to identify a scam).
There are too many missing pieces for me to comment on Captain Joe’s post other than to say that PSA readings while on hormone therapy, or immediately afterwards are meaningless as the treatment suppresses PSA and does not in any way indicate remission of the cancer. Anyway … the Captain’s post reminded me of a study in my files that might interest some of you. “CONCLUSION: To our knowledge, this is the first report that PSA may function in tumors as an endogenous antiangiogenic protein. This function may explain, in part, the naturally slow progression of prostate cancer. Our findings call into question various strategies to inhibit the expression of PSA in the treatment of prostate cancer.” ” PSA is neither prostate specific nor made exclusively by prostate epithelium. PSA has been found in patients with breast, lung, and uterine cancers. Circulating serum concentrations of PSA have been documented in healthy women and in women with benign and malignant breast diseases.” “In one study of particular interest, patients with breast tumors with high levels of PSA had a better prognosis than those patients whose tumors had lower PSA levels.” “These and other observations prompted our speculation that increasing PSA concentrations may not be a harbinger of bad news and prostate cancer progression but, rather, may indicate that the body is attempting to fight cancer by producing its own antiangiogenic proteins.” I recall that a biotech company in the 1990’s was attempting to develop treatments involving INCREASING a patients blood levels of PSA. Don’t know where that went. So maybe you should be happy about your rising psa levels! Here are two studies, 10 years apart: http://jnci.oxfordjournals.org/content/91/19/1635.full and: http://www.urotoday.com/prostate-cancer-1014/antiangiogenic-properties-of-prostatespecific-antigen-psa-abstract-2223492.html
Thanks for the kind words Alan. Ed – I agree that skepticism can be healthy, but do you have any proof that this is a scam? I don’t think one can claim a scam based solely on a cute name otherwise “Viagra” or a host of other drugs or medical services would be included. I googled such things as Bostwick “Laboratories + scam” and “ProstaVysion + scam” and didn’t come up with anything damning. In fact, it appears that Bostwick Laboratories has a good reputation. IMO determining the aggressiveness of prostate disease is the missing piece of the puzzle and sooner or later someone has to come up with a test for this. I hope this is the case, but would be willing to listen to proof to the contrary. Michael – Sounds like this could be a worthwhile research topic for a medical journalist. Have you heard of ProstaVysion or have any opinion regarding the reputation of Bostwick Laboratories?
Murray the real scam is and always will be PC itself. And since the beginning of time — other scams just like it always bring out all sorts of hucksters and medicine men to take advantage and exploit the gullible among us. I don’t know anything about ProstaVysion and I don’t want to know anything about ProstaVysion and I don’t need to know anything about ProstaVision to tell you that its worthless. I guarantee that whatever report Alan gets will be totally ambiguous. It will come some form of liability disclaimer guaranteeing nothing and stating that the information is to be used at your own risk. And I wouldn’t be surprised all if included a recommendation to resubmit more samples in 6 months or a year for repeat testing — maybe at a discount. Even if it was legitimate, this is just more of the same of what you have been doing with all your research and more research and more questions and answers that only generate more questions. Its information overload. And it hurts rather than helps clear decision making. At some point, and very quickly it the case of pc, the law of diminishing returns takes over. The situation is somewhat analogous to studies I’ve seen of expert handicappers or stock day traders. They often meet with some initial success .. that encourages them to take bigger risks … and as the money on the line increases they look for more info, do more research, try to cover every angle … and they eventually become big losers. And if someone thinks their life is on the line — there will never really be enough information. “Keep it simple, stupid” applies here and it doesn’t get any simpler or less ambiguous than this: “Patients with well-differentiated cancer do just as well with or without treatment, and those with poorly differentiated cancers tend to do poorly with or without treatment. ” Its something every urologist worth his salt knows for a fact. Its exactly what the USPSTF report is saying: no screening, no diagnosis, no treatment. Its exactly what you with your well-differentiated cancer don’t what to hear and its not what anyone with poorly differentiated cancer wants to hear. So there’s lots of money to be made all around and lots of takers for all that money. The USPSTF report clearly restates that there is no reliable and proven method to distinguish between indolent and aggressive PC. But I imagine that Bostwick Labs (don’t they do hair transplants too?) is probably right in there fighting now, submitting public comments and asking why the task force overlooked their fabulous analytical processes. So until the task force modifies their report to endorse ProstaVysion — I’ll stand by my position — its a scam!
Ed – I think you often present an interesting perspective but where I have a problem is with your apparent view that the only acceptable treatment for prostate cancer, and maybe even all cancers, is palliative care. There comes a point where following such advice means literally waging one’s life on the belief that the entire medical profession, even those who are more progressive regarding AC, are either wrong or dishonest. You are obviously a very intelligent fellow, but you have an engineering rather than a medical background. I’m not sure what type of engineer you are but if the situation were reversed, I might consider a doctor’s opinion regarding, for example, an innovative bridge construction, but at some point I would need to consider an engineering opinion before I sent traffic over that bridge. Basically there comes a point where we need at least some faith in the people who’ve spent their lives in the field.
@ Ed, after reading your posts, it sounds like you were caught off-guard and are rambling, finally falling back on old arguments for lack of anything pertinent to say. The fact that you started off by going on and on about PSA when it does not even play a role in the ProstaVysion test proves that. The bottom line is that you will always be against any test to aid in the battle against prostate cancer because, if you believe as you do that nothing should be done, then how could you be for it without being a hypocrite. I am surprised that you haven’t disowned your urologist friend in Europe since he does treat some patients. Could it be that he only treats patients with symptoms? (note that watchful waiting in Europe is different than in the USA. You are told to go home and come back when you are not feeling well. Of course, with PC, if you are not feeling well due to the cancer, then you are in some serious trouble). As a final note, what is really disturbing (and goes to the very heart of your credibility) is that you don ™t believe in monitoring or treating any form of cancer, no matter how aggressive it is. Am I wrong Ed? That is what you believe, isn ™t it? If I ™m wrong, then put me straight and I will apologize. I wonder what the parents of children with cancer would have to say about that. Would you really have them do nothing as well? It is one thing to be against monitoring and treating a slow growing cancer, like PC, that largely attacks older men who will likely die of something else before the cancer kills them, but to be against fighting other cancers that are much more aggressive — well, I ™ll let the readers decide for themselves. Does that sound rational to you? I invite any and all comments. P.S. Murray, you are doing great, though I might just put forth a few comments from time to time.
Murray … I’ve never said anything about not treating all cancers. Some are curable. Many aren’t. I’m not asking or expecting anyone to “believe” anything I’ve said. I’ve backed up all of my arguments with legitimately sourced medical citations. Take it or leave it. I’m just trying to get you to think. I have nothing at all to gain from this. As for those people here pushing services or books with their own personal testimonials — there’s no way to know if they aren’t just paid shills trying to drum up business.
Murray … this guy is a doctor, not an engineer … but he probably would have been a good one: USPSTF Co-vice Chair Michael LeFevre, M.D., M.S.P.H. “LeFevre, who publicly questioned the value of PSA-based screening more than a dozen years ago, told AAFP News Now that more than 300,000 men have been enrolled in randomized screening trials in nine countries and, after 10 years of follow-up, “the hoped-for benefit is not apparent.” LeFevre is professor and assistant chair in the department of family and community medicine at the University of Missouri, Columbia. He said that for every 1,000 men treated for prostate cancer, five die of perioperative complications 10-70 suffer significant complications but survive and 200-300 suffer long-term problems, including urinary incontinence, impotence or both. “That’s a lot of harm for a cancer that didn’t need to be treated in the first place,” he said.
@Ed. I have to say, since it seems no one else will, that comparing Howie’s urologist to Dr. Josef Mengele, The Angel Of Death from the Auschwitz Nazi concentration camp was offensive. I have followed this site and have seen some people, like Jim G, take the low road with his mean-spirited, antagonistic postings, but the most recent expression of your anger was way over the top. Murray talked a while back about keeping the debates and diagreements civil, after being derided by Jim, and I second that opinion.
That last line was supposed to read: “So stop asking me to keep posting” … and don’t get me started on colonoscopy or skin cancer. And Howie nothing you could say would ever be more troubling to me than hearing that a doctor who took a “do no harm” oath recommended that someone with your biopsy results be treated. (let alone do a second biopsy on you based upon nothing at all). You sound like an nice honest guy — there’s no reason you should have to deal with this BS the rest of your life. (but I understand that you obviously are a “believer” and there’s nothing I can say that can possibly compete with your lifelong faith in your medical system).
Actually, Ed, what I have read here, written by you and others, and what that has prompted me to read elsewhere, and talk about, is causing me to question just about everything about our medical system. Not walk away, necessarily, but definitely scrutinize and question.. Thank you for that.
I forgot to ask my question. Has anyone ever heard of a single hard spot, or a cyst in the prostate? (biopsy neg. prostate normal size) My urologist said after draining it, it went flat, but in 6 months the hard spot was still there, not gotten any larger, but hadn’t gotten any softer either. 6 month PSAs were 0.7 and 0.6. Do you have any advice. I’m thinking I’ll keep up the 6 month PSA’s and hope the spot doesn’t enlarge or PSAs get higher.
Gary, live your life with joy and peace. You are so blessed at 67 and have a biopsy come back negative. Live to the max, you are truly free. If you feel compelled to have the 6 month PSAs, go for it, BUT live free in between and do NOT worry. Worry creates a personal “hell” of fear and “what ifs.” Refuse it live in the gift of life that is yours!!
I was diagnosed with prostate cancer two years ago – PSA was 47. Bone scan came out negative. Commenced hormone therapy and PSA dropped to a low of 4.7, and then increased to 5.0 and most recently 10.0. My attending oncologist didn’t seem too concerned however. I just received my biopsy report from two years ago – Gleason score was 3+3 on both sides. Left side showed 30-40% of the tissue was involved and the right side showed 50%. Any comments from similar experiences?
Howie. As I have mentioned more than once, one of my best friends in the world is a urologist in Europe. Much of my knowledge about pc has come from him. He’s one of the smartest guys I know. Known him for 30 years. Spent nights on call with him. Accompanied him on his hospital rounds. Once stood by his side in an OR and observed as he performed a kidney operation. He speaks multiple languages. He’s constantly updating his medical education. He travels the world to urology conferences and symposiums. I’ve talked to him for hours and days on end about PC. We often exchange studies and comments on them. There could never be a more concerned and caring doctor. He works long hours. He lives in a modest apartment. His primary compensation as a doctor is not money, its the respect his society accords him as a physician. He works in a relatively small town. Many of his patients are people he’s known all his life and almost all know him through his interaction in the community. He could never walk down a street without being repeatedly stopped and greeted. In a pub he drinks for free. Since health care in his country is also free, many patients feel they have to “pay” in some way — its more of a tradition — so they usually show up at office visits with something, often home-made, often a bottle of alcohol. Like the saying about dermatology being the best specialty because “your patients never die and never get better” — he once told me there is a saying in his culture: “sooner or later all men eventually end up in my office.” So I’ve witnessed urology care in his setting and I’ve experienced it here in the best country in the world. It would be more than an understatement to say that there is absolutely no comparison. The biggest difference is that his system truly allows him to treat patients as whole human beings. He knows all too well the psychological burden cancer patients must bear — and just as well, he knows the real physical suffering pc can cause. I’ve watched him interact with many elderly patients, some of whom he’s told ME that they’ve had pc for years, but he hasn’t told THEM. Because they will die of something else. He has no fear of litigation. It never happens. Of course he tells some people — but its always: “it depends on the person,” and his diagnosis, and the true need for treatment. While he sometimes uses PSA as a diagnostic tool, he’s never used it as a routine screen and he never tells people their PSA number because “it only makes them crazy.” He doesn’t take his responsibility for his patients lives lightly — part of him lives and dies with them. These are people he knows and cares about. But whether he personally knows them or not –he treats everyone as if it was his own father. Try getting that in your 10 minutes at your next urologist appointment — here in the best medical system in the world.
@ Captain Joe (and all others practicing active surveillance out there â€œ READ ABOUT PROSTAVYSION BELOW). I got sick in 2007. Blood work revealed a PSA of 47. Antibiotics dropped that to 5, and a biopsy confirmed I had cancer. Now four years later, my last biopsy revealed that I had cancer in 4 of 12 cores, which were all 45% cancerous. Back when I first posted here, I said that I was holding out hope for a breakthrough in genetic testing, which I had been reading about. When introduced, it was suppose to give insight into the aggressiveness of the tumor. This information was very important to me in that it would make the difference between having surgery and continuing active surveillance. Note that my first 12 core biopsy had only 2 positive cores, which were 5 & 30% cancerous. The recent biopsy could mean progression, although it is not possible to know for sure because results can change from year to year due to changes in needle placement. All I know is that I couldn ™t take that chance. My results were, at the time, the worst I have seen for a Gleason 6 on this website. Still I could not pull the trigger on surgery until I knew I had done everything I could to avoid it, or any other kind of treatment. After all, according to a formula developed @ Sloan-Kettering hospital, I still had a 34% chance of having indolent cancer (meaning it would not likely need treatment). In my ongoing research into genetic testing, I came across ProstaVysion. It is new (I believe it came out in May of this year) and it is only performed by Bostwick Laboratories. Here is a little excerpt from their website: Bostwick Laboratories is proud to offer ProstaVysion, the first personalized genetic panel for prostate cancer. A tissue-based panel, the test examines three major mechanisms of prostate carcinogenesis: HOXD3, ERG and PTEN. By examining all three of these markers, ProstaVysion is able to provide molecular analysis of the aggressiveness of the patient ™s prostate cancer and his long-term prognosis. Google ProstaVysion Â? (note the spelling) to find out more about it, or call them up. I did, and they put me in touch with their rep who helped me make arrangements to have the test done. The GREAT part of that was that I was not subjected to any additional tests (or biopsies). All they needed was for Lahey Clinic to release my biopsy slides to them from last January. It was that simple. It will be 7 to 10 days before I get the results back, but I have some hope where, before, there was none. Note: I was going to wait until my results came back to post this, but I thought Captain Joe could benefit from this before he moved on from this website, possibly to never return. Good luck to all for which this information is relevant.
To Howie: View the documentary “Forks over Knives” . Read the book by the Campbell’s: The China Study, from 2004.Take a look at the Jay Kordich site for juicing. The allopathic medical community only looks at symptoms which are the 20% solution with diet, supplements etc. Diet and exercise are the bio-chemical link. The 80% solution is in our emotions and feelings. We are spiritual creatures living in a human body. It has been described as our spacesuit by others. Find your own personal stillness. Go within. Look at the anger, frustration, stress, anxiety, irritation and especially that ‘hurt inner child’ from eons ago. There you will finally find answers. Allow the idea, the very existence of a silver bullet, to cease and desist.
@Ed: The anger you display online here towards “urologists” is perhaps what I am trying to enunciate. These men are just doing a job they have been taught. They are not bad people. Yes, there knowledge is limited. It’s the medical university system that taught them to regard their intervention as a cure, when none is really needed in the early stages. Seek your own peace Ed. It’s within you and all us men, who wait too long to openly discuss our masculinity and how that dovetails with our sexuality, with no fear.
Great idea Howie. Change tables. Find a friendlier dealer. Smart move. But by all means stay in the game. Plenty of seats open up all the time at the AS tables … but before you sit down ask yourself what happened to the last guy who was sitting there.
Anyone who’s read all of my posts knows that my anger is directed at the for profit-medical system. Its the same system that’s being challenged on Wall Street right now. The profit motive eventually corrupts everyone. Doctors can’t turn down free money anymore than a sub-prime mortgage broker.
Dentists call themselves doctors too. Here’s one great example I’ve been using for years. An investigative reporter for Reader’s Digest who has no dental problems travels the country visiting 50 dentists at random saying he had just moved to the area and was looking for a new dentist. All the various dentists give him estimates for “needed” work ranging all the way up to $29,000! If you haven’t seen it its worth a read. http://pumiliafamilydentalgroup.com/dentists.html Ain’t capitalism great! I’ve lived in Europe … and whether its a dentist or a doctor … having someone who has no financial interest in treating me just seems to be a better way of doing things.
Lest anyone really think its just urologists … I’m sure many of you true blue “believers” out there have wives who have been “thinking pink” all this past month. While not as clear cut as pc and the magnitude of the untreated are not as great, its much the same story. Trade a very slight, if any, real reduction in the risk of dying of breast cancer for a TEN TIMES greater risk of falsely being diagnosed and treated. Here’s something I submitted to the NY Times after an article citing even more new studies finding mammography next to useless: “Early detection saves lives. Early detection saves lives. Everyone has heard a thousand times. Everyone knows it for a fact. Breast cancer awareness month. What a joke! Who the hell in this country is unaware of breast cancer? And what cave was that person living in for the past 20 years? You used to see ads for free mammograms all the time. Just like free brake inspections at Midas. Just like all the free PSA screening. That was just to get you in the door. The follow on mammograms for the rest of your life won’t be free. Neither will your unnecessary treatment. Neither will all the associated health care services you’ll be pressured into for the rest of your life … and you’ll likely agree to now that you are in the hands of people “who really care about your health.” If you know a breast cancer “survivor,” and who doesn’t … its much more likely than not that they’ve been treated for nothing. But there they all are — out there in droves at the front lines this month proudly urging everyone to “THINK PINK.” What a deal great deal for industry — no need to give away mammograms for free anymore! The for-profit medical industrial complex has created a marching army of shills to perpetuate their cause and keep the profits rolling in. All the evidence in the world wouldn’t convince these women that they most probably were treated for nothing. They don’t want to hear it. And the last thing the medical industrial complex wants to do is write off their billions in investments in mammography equipment or turn down a nice hefty chunk of automatic annual profits for performing a useless screen that most women have been trained and conditioned to demand. Whether its typical strawman “blame it on Obamacare” or the government and insurance companies meddling in the doctor patient relationship or misrepresenting the evidence to raise doubts …the industry is just where they want to be on this issue. Like Midas, they really only care about you! Yeah … right! If this fiasco is turned around in less than a generation it would be a miracle.” So stop asking me to me posting.
Thanks for the information, John. I appreciate it. I am sorry if my note troubled you, Ed. It is just that I find your views very interesting, and (in my opinion) clearly valid, in some respects. Thanks, Howie
Howie, I’m curious as to why your doctor recommended biopsy with psa within normal (or within margin of error) parameters for your age. Studies now suggest psa velocity is not a valid predictor of problems, yet many doctors seem to be ignoring the data. Perhaps there was some other reason.
I have reached that age where they suggest testing is a bit pointless……75! My GP suggests it is time to have a biopsy, my first, but I read here that this may not be a ‘brilliant’ idea. It seems that at age 75 my warranty runs out and I should just take bets on which bowling ball is going to knock me over. If I don’t have the biopsy how can I best assess my situation…… …..and should I take steps to treat an enlarged prostrate first. Total PSA 7.2…..PSA ratio 17
Howie, if there is a god, I’m certain that there must be a special place in hell reserved for your urologist — right along side the likes of Josef Mengele and Walter Freeman.
Bruce and Ed: Thanks for your comments. Bruce: I had my first “elevated” psa a year ago, as part of my annual physical. It was 4.0. The GP recommended a urology consult, so I went. The uro had it checked again, and it was 4.2. He told me I needed the biopsy, and I had it in Oct 2010. I had 2 of 12 PIN, no cancer. He said come back in a year. So about a month ago, I had another psa check (a year later) It was 4.4. The uro said I needed another biopsy. It came through as I described in my earlier note, one core of Gleason 3+3=6, 5 percent, and two PIN’s. The uro sent me to see the radiation oncologist that he practices brachy with. My head is spinning with all he information I have taken in during the past 10 days. All I know for sure is that I don’t know what to do right now, and I’m not doing anything until I feel differently. I have made appointments with several other urologists to get their opinions next week, and welcome all suggestions here. I live in the Washington DC area. Ed: I’d like to think I’m not “all in” since I have not made a decision yet, but I am clearly “in the game” with the cancer diagnosis. It is puzzling to me in that I am 59, in perfect health, 6’1′, 162 pounds, eat carefully, swim 5X a week, and have never been sick. And now I am sick even though I feel great? That just feels all wrong, but I am still learning and dealing with all the emotional pieces of it, too. Thanks and good luck to all here.
The more I learn, the more apparent it seems that AS is the only way to go. I appreciate any / all comments and opinions. Thanks and all the best to everyone here.
Gary-in my humble opinion getting any more biopsies with a PSA as low as yours, especially considering your age is looking to open the proverbial can of worms. Would love to hear what our old friend Ed would have to say about that!
@ William K You have years of watchful waiting ahead if you want. With the size of your prostate, your PSA of 4 is really more like a 2.
59 yrs old, Oct. 2011 PSA 4.4, biopsy result 1 of 12 Gleason 6 <5 percent. Brachytherapy recommended and was actively planning until devouring everything on this site. Michael AND Ed: thank you and Ed please do not stop posting..agree or not, we need your views.
I am a 67 yr old WM in Okla – 68 in 2 weeks. On my annual in 11-2010 my family Dr. of 30 years did regular finger wave and said I had a hard spot/lump on my prostate. Bloodwork PSA at 0.7. Went to my Urologist (I’ve had kidney stones), and he did prostate biopsy (terribly painful & I passed blood clots in urine for several days).He said the lump “deflated” when he stuck needle into it. He captured some of the fluid. Took normal 12 needle biopsies from prostate, and 6 more in adjoining tissue area for good measure – sent them off to Maryland Urology lab. All pathology came back negative for cancer- but I still have hard spot on my prostate.Now I get DRE every 6 months with PSA – which actually dropped to .06 on last lab work. He said cysts don’t normally form in prostate, but he doesn’t know what else it could be. I am about to quit worrying about it. My family is high on cancer deaths, so I gotta worry a little. I’ve had 4 way bypass (4 years) and knee replacement (2yrs)..No more for me thanks.
Due to a psa that had increased from 2+ to 4+ in a little over a year, I just had a biopsy. The result was a Gleeson 3+3 in one of 12 samples, and the urologist said it was mostly good news since it was caught very early and is not an aggressive form. We agreed I could wait a month just to go back for a consult on the treatment options, including the “wait and see” option. He also reported at time of biopsy that my prostate was 3-4 times normal size, so I find the comment about large size triggering more PSA’s was very helpful. I will pursue that, but the fact is I have cancer and will need to deal with it in some way. I am just starting down the road now, basically having waited for the biopsy to do any real research. This is the first site I have visited. Let me just comment on the website author’s negative comments on biopsies themselves. Yes, I had distinct discomfort for about six hours after the procedure, but then was fine. I passed blood in the very tiny urination at the medical center and then again on the first urination after returning home. After that things cleared up very quickly. I also passed some dried blood upon first ejaculation about 5 days later. No big deal, and some discomfort as a result of that for maybe 12-24 hours. They said to wait a week for intercourse, so I took my chances after 5 days. No real problem. I am not freaking out and will continue to read more about the Watch and Wait option. I seem to have one of the best urologists in the state, and he seems attuned to watch and wait as a viable option. It is a practice of a dozen or so urologists in a huge facility that is the main prostate cancer center (maybe the only one) in the state. This should help. But I know enough about doctors, especially the bias of surgeons to PERFORM SURGERY, that I will take my time, study all that is available, and then make the most intelligent possible treatment choice, including maybe no treatment at all until something further is discovered via PSA or biopsy, and/or ultrasound. It’s comforting that even my regular doctor AND the urologist readily acknowledge that watch n wait is a viable strategy.
Hi William, I’m in the same place, except with a couple of months more experience. Unfortunately, things don’t seem to get a whole lot easier with more research and in some ways even become more confusing. The trouble is that there are such radically different opinions from very intelligent people. You’re lucky to have a urologist who supports active surveillance. Mine considers me too young (52) so I’m currently seeking other opinions. I would suggest that you also check out the Yana website which you can access through the “links” section on this one. I would also recommend the “Healingwell” forums which generally represent a more conventional viewpoint but offer great support and some discussion of active surveillance. I’ve also found support groups to be a good source of support and can often provide useful recommendations regarding medical professionals and programs. All the best.
Wow dead board without Ed around. Been lurking and wondering if those studies about pc cells circulating in the blood after biopsies will ever show up. I did find something in that best ever article about circulating pc cells after prostate removal surgery so there must be some way they can tell. Tough break David youre now up a river without a paddle and I wouldn’t be thanking Ed so fast if I were you because it looks like you missed his keep hoping mockery. He thinks you are a fool for getting tested and a fool for getting a biopsy and a fool if you get treated. I also found this in one of his references. Looks like the Chinese are ahead of us on many things. “A biopsy can stimulate the inflammation that helps the cancer,” Luo said. “When I was a doctor in China if we saw a cancer in patients we would do a biopsy just before the surgery. It was standard procedure. This is a better way because if the biopsy is done much earlier, it could help trigger metastasis.” Its here: http://www.scripps.edu/newsandviews/e_20080728/luo.html Here in this country we do a biopsy and then its come back in a few weeks for your results and then a few months for your surgery. No messing around in China a biopsy and surgery in the same day. Put this together with what Michael’s oncologist said about biopsies causing some cancers and Ed’s theory about Steve Jobs isn’t so far fetched and who knows what really happens when you go sticking needles in a little Gleason 8 that wasnt bothering anybody.
David, You may want to get a second opinion on your biopsy results. Send them to Jon Epstein at 410-614-6330 or firstname.lastname@example.org Here is a link http://urology.jhu.edu/jonathanepstein/index.php
Thanks for your input, Ken. I really appreciate it. A 2nd opinion of my biopsy is already underway.
So very sorry David. Since I wasn’t able to talk you out of a biopsy I won’t bother trying to talk you out of treatment. So you played the game … and now you too — like more than a million others … have been forced “all in.” All I can say is good luck the rest of the way. Keep hoping …maybe you will be ONE of the 48 who benefits from treatment. This really is my last post here … this is all just too sad.
Hi David, Sorry to hear about the news. It is just my opinion, but if I had Gleason 8, I would not hesitate to get treatment. The good news seems to be that the biopsy indicates that the tumor is still relatively small. The other thing that I would suggest is joining a prostate cancer support group. You will likely meet people that have had more severe cancer than your own and who are now doing quite well. I wish you all the best.
Thanks to both Ed and Murray for your well wishes. The views of the many help those of who feel so alone sometimes when this kind of news slams into us. Right now I am trying to sort through and process all of this. Please feel free to jump in. I welcome ALL views and opinions because the truth is VERY VERY difficult to discern, as many of you know. Thanks in advance!
Biopsy results were not what I wanted to hear: A gleason of 4+4=8 in 2 out of 12 cores with 20% and 30%. I was hoping at worst for a couple sixes and walk away from it all and live outside the system, but with an 8, I am thinking that treatment of some kind is the only option left. As stated before, I will be 70 trs old next month and in great health otherwise. ANY and all comments and opinions are more than welcomed–Thanks everyone
… 15 years later (and 15 years too late) … the second best ever article ever written on this subject: http://www.economist.com/blogs/babbage/2011/10/diagnosing-cancer
Thanks for the article, Ed. Had a biopsy last Tuesday and will be going over the pathology report this coming Tuesday. I will be 70 yrs old next month, and am of the opinion that I wish I would have NEVER gotten on this crazy merry-go-round in the 1st place: PSA’s, countless inuendos of needing to get a biopsy, thinking about the possability of having PCa when I wake up and when I go to sleep and in between. I hope the biopsy is negative but at 70, it is a 50/50 deal. I am thinking more and more of doing nothing about it no matter what the pathology report. I am in great health and just want to live my life out none of us will get out of this alive anyway. Thanks for any thoughts, and thanks Ed for the recent article.
Sorry I wasn’t able to change your mind. You’re keeping my record of failure pretty intact. I know that there is no reasoning with “believers” in anything … but I keep trying anyway. Its akin to trying to change someone’s mind about their belief in god. The metaphoric similarities between religion and medicine are striking — and I’ve found that in their strongest form, these beliefs usually go hand in hand. Lots of people go to doctors for the laying on of hands, for reassurance and the good feelings that come from being told they are “healthy” and OK. Its like confession and absolution — with their Rx slips their penance and their pills a daily communion. All the equivalent “rituals” are all there — from listening to your heart, bp measurements etc. … all the way up to the more confirming sacraments like blood tests and yes … biopsies. Each and every one contributing and acting to reinforce belief. With the ultimate sacrament … the Holy Orders … being an operation — something like a RP. Where you are then elevated to the highest level of medical consciousness –, a point where you can never turn back (note the million-man army of RP “PSA testing saved my life” “misery loves company” survivors the system has created to perpetuate this fiasco) — religiously bearing their scars and suffering while attempting to “convert” all others with their proselytizing. In talking to the many confirmed believers I’ve known over the years I’ve made an interesting observation: “the more operations they’ve had — the more operations they’ll have.” There’s something about it all that makes them want to keep going back again and again — its incredible how the operations are usually for varied and unrelated reasons. I learned a long time ago never to waste my time with someone who’s had something like bypass surgery — you don’t let someone do that to you and ever question anything again –most are ready to jump off a roof if someone with an m.d. after their name told them to try to fly (and the for profit “system” milks these people for all their worth — its a big part of are health care cost problem). Anyway … please excuse my going off on this tangent — I’m just saying that I understand that, however logical, a message board cannot compete with all the grandeur and trappings, the pomp and circumstance of the churches and cathedrals, and all the lifetime of ceremonies performed by the high priests of the modern medical industrial complex. No one who’s exposed themselves to all that for 70 years old is going to easily discard their beliefs. So good luck …I’m hoping too that your biopsy results are negative (but if I were you … I wouldn’t be surprised if in a few months … you found yourself actually longing to have another one). All the best.
@ Murray I don’t know too much about hyperthermia (heating of the tumor) but it appears to be experimental and used in conjunction with radiation, with mixed results, on certain cancers, including cervical, but I haven’t seen anything about it used on prostate cancer. If it is anything like cryotherapy (freezing the tumor), i’d stay away cause of the side effects — impotence in nearly all cases.
@ Mike P Again, I am not an expert but it doesn’t appear to me that the PCA3 test is any better than the PSA test, at least not yet.
The Award for Most Fear-Mongering Health Care Statement of the Year. http://technorati.com/lifestyle/article/the-award-for-most-fear-mongering/
Would Ed or Mike or anyone else be able to comment on this as I have not seen it mentioned. I am 69 years old and my PSA levels have been as follows: March 2009, 3.62, March 2010, 4.43, August 2010, 3.78, and August 2011, 4.35. I am fairly active cutting grass, working part-time at a golf course and have been tghinking of having a shoulder resurfacing to be able to play more golf. I had no discomfort, had to get up at night 2-3 times depending on how much fluid I had to drink before going to bed. I would also take a flomax ONCE A WEEK to “enhance” the flow. Anyway after my last PSA of 4.35 my doctor suggested I see a urologist. When I saw the urologist I thought I was going to get a routine DRE, but it seemed a lot rougher than I thought it would be and actually had to strain to contain urine. The urologist then wanted a urine sample immediately to have a PCA3 test done. After the test was completed, the number for the PCA3 test was 185.3 and was told I should have a biopsy and cystoscopy because a number so high would most likely produce cancer. He also stated the prostate was kind of hard with no nodules. Ever since this “massage” for preparation for this test, I\’ve had a dull ache in my testicles which seems to be lessening and also some discomfort upon ejaculating which also seems to be lessening. When he suggested the biopsy and cystoscopy and I said I will need a little time to think about it, he seemed a little taken back. My life at this time has become a nightmare because every little ache or pain that I experience which I normally would dismiss, I now think the worse. I\’m having a difficult time making a decision and would appreciate any and all thoughts or suggestions, especially in the area of the PCA3. Thank you.
Another question to Mike. During your medical writing career have you ever heard of hyperthermia to treat prostate cancer? http://www.news-medical.net/news/20100416/Trans-urethral-prostate-hyperthermia-treatment-offers-10025-response-rate.aspx Any opinion on whether this is a viable treatment option?
Mike P. ince you asked specifically asked and your story sounds sincere I’m going answer. First of all Flomax once a week is probably doing nothing for you. Don’t know why or who told you to do that unless it may have been prescribed as a “placebo” treatment which some doctors legitimately do. You might see some improvement in your symptoms if you took it everyday although I’m not telling you to do that without talking to a doctor first because it could cause other problems esp. in the unlikely event you have low blood pressure. Flomax is just a high blood pressure med with a sometimes useful side effect that’s been around for a long time — maybe a slightly different molecule — packaged and marketed with a catchy name so they can charge a lot more for it. If you had a half way decent doctor (or maybe one who was a relative) he could prescribe you an equivalent dose alpha blocker that probably costs 1/10 of Flomax. But the manufacturer of Flomax keeps track of all those Rx’s and who writes them and then kicks-back — maybe with an all expense paid tax-free medical “seminar ” to some resort in Maui! And then we all pay for your Flomax and your doctor’s vacation through our insurance premiums! Good for you for telling your doctor you wanted to think about it all. “Taken aback” … those are the same words my brother used about his urologist, who was pushing him into RP ASAP, when I told him to get his biopsy samples and tell his m.d. he was going to have them sent somewhere else for a second opinion along with DNA analyses to make sure they were his (… and where they were subsequently reclassified from Gleason 7 to Gleason 6) (… and where subsequently my brother found out that his urologist had a financial interest in the pathology lab who made the initial diagnosis) . Ain’t capitalism great? You say you had “no discomfort” … so it sounds like If you were referred to a uro because of your PSA and not because of uro syymptoms. If you accurately portrayed what happened at your uro visit I would suspect your uro is on the Gen-Probe kick-back gravy train. ( PCA3 costs 10Xmore than a PSA) Also sounds like he did the test without your permission … or explaining what he was doing … or getting your informed consent. Also sounds like since your low PSA’s at your age weren’t enough, he was just fishing for a justification to do a biopsy. This is all enough of a reason to find yourself a new urologist. But I would do that only if you had uro symptoms that you wanted help with — at which point cystoscopy might be reasonable to help in a treatment decision. Read all of my previous posts — your PSA’s are nothing but totally reassuring — and regardless of your PCA3, at your age the odds are that you have some minor amount of pc — you don’t need a biopsy to tell you that — and the odds are that it’ll never effect you in your lifetime. For everyone else we are probably looking at the future here — as the debacle that was the “PSA era” rapidly comes to a close — get ready for Act 2 — the next great prostate cancer fiasco — the “PCA3 era.”
Herein lies my story. I am now 63 yrs. old. I was initially diagnosed in 2005 with (3 of 6 cores) reading positive. It was a Gleason of 6, i.e., 3+ 3. My doughnut had a volume of 43 cc. At the time, my PSA was 7.7. 6 years ago, the urologist wanted me on the table as he had an itchy scalpel. I said no and he recommended 120 ss bits of radioactive metal for my gland. The thought of walking about, rattling like an old sabre put me off for sure. Then as I awaited the surgeon coming in for counsel I got the news that my PSA had dropped to 6.4 in 3 months. In 2009 I was given a free bill of health on my second biopsy (8 cores taken) with “no cancer found” . My PSA had moved up to 9.2 volume of 48 cc. In May of 2011, with a PSA of 12.9, all 12 cores were positive with 6 @ 5-10% and the other 6 @ 10%. My urologist gave me two options: radiation therapy and a radical. My volume is now 51 cc. I have read with interest how the leading urologists in the US from your blog, will not intervene in Gleason 6 cases like mine and yours. Here, the urologist looks at me as if gloom is setting in fast. I have been told and read often, that what is important are two things from the scientific POV: 1) the doubling time for PSA and 2)the Gleason score. Yet my Gleason has remained the same and the PSA has not doubled in these 6 intervening years. I have virtually no symptoms. I take no prescription meds for this ‘condition’, usually sleeping through the night without having to get up to pee. If I do, the urine stream is slow but not painful. The medical community has been telling us men that we have to submit to invasive treatment. All they can say is what they are taught and have learned from the lab work in their beloved ER’s. Yet the real horrible truth is that many men are worse off after “the treatment” . That is from the Dallas U study several years back with nearly 2,350 respondents. Their upshot at the end was 50-50. You lay down on the health conveyor and take your chances. I have recently taken in the documentary “Forks Over Knives” . I will transition to a no animal product diet over the next 3 months, allowing myself only one animal product meal/da. In an email shared with Michael, he stated he would be concerned about going from no positive core samples to 12 in 2 years. So was the radiation oncologist I saw Friday at Dalhousie University. He is going to demand the pathologist revisit the ’09 and ’11 biopsies. This PC scenario seems to be all about numbers. All the allopathic medicine community can do is apply their bio-chemical knowledge which leaves out how we as humans change our cellular physiology through our thoughts “that stinkin’ thinkin’ ” . We are more than just these organic molecules. They really still have no idea on how the dynamics create PC. To be continued…
How do, Jerry here. I’m a 53 white male with a PSA of 0.5 I recently had a coloncopy which was clean….was told I have a small spot on my prostrate and should get it checked out with a Urologist, which I did. The doc confirmed a firm area and recommended at my age a biopsy which I did blindly with no research on the subject. It was a horrific procedure resulting in one of 12 biopsy’s with one extremely small focus level 6. I’m healthy in every other way and have no family history of any cancer. The doc told me to take my time to figure this out, but recommended some course of action with a short stint of watch and wait until I figure the best procedure for me. After several days of sitting on this computer, I’m pretty damn sure I’m going to get just PSA’s in the future and keep their hands off my prostrate with the needles and their rubber gloved fingers…..If I die tomorrow I’ve led a great life. It seems like the odds are way in my favor. My gut told me even before the results and research after that terrible procedure, that their is something very wrong with prostrate biopsies….poking 12 holes and removing 1/2 inch by 1/16 sections can’t be good for that organ and once asked my doc waved off any and all concern. I don’t trust any of this prostrate cancer intervention and think their just throwing (well meaning) darts and making plenty of money in the process, which is just a coincidence right… -Jerry
ED: please continue posting. What I meant by the task force caving is the final recommendation will come in a month after the “public” weighs in. All the “survivors” , especially the well known, Sczwartzkopf, Powell, Rudy G, DeNiro, Joe Torre, etc and the scores of MD’s warning of a surge in deaths if the recommendation is taken. Michael: No one knows who is right, it is all just opinion and speculation. Although described as “fine” , biopsy needles are 18 gauge (ouch) and the bleeding goes on for days or weeks. Obviously there is an inflammatory process (normal part of healing) going on there, the significance which is unknown if it involves cancer cells. Spreading cancer by biopsy? While I’m NOT convinced the answer is NO, keep in mind that a million prostate biopsies are done each year. If it was a clear cut danger I think you would be seeing it in the mortality rates.
At first I was going to respond again with more about biopsies and cite studies about “evidence for suspect hematogenic spread of PC cells” and “prostrate cancer seeding along needle tract” (google those search terms yourself if you want). But since I’ve declared the war over with the USPSTF report and I’m going home (really I’m going) … how about this for a final parting shot? Yes … I am guilty of exaggerating the dangers of pc spread by biopsies! The life of any anti-war protester is hard and the firmly entrenched proponents of endless wars (be they on drugs or terrorism or pc) hold all the cards in the PR game and since all’s fair in love and war I felt obligated to respond in kind . By way of example, right off the bat we’ve all heard over and over : “YOU HAVE A 1 in 6 CHANCE OF BE DIAGNOSED WITH PC in your lifetime” (i.e. BE AFRAID … at least they’re being honest with their mostly dumb-assed audience … yes its true thanks to them — key word “diagnosed”. Not even in the fine, finer or finest print did I ever read:” There are about 380 men with cancer of the prostate for every patient who dies of the disease.” One in 380! So even if my odds of being “diagnosed” are 5 times greater because of my dad and brother (1/6 X 5 = pretty certain), I’ve never lost any sleep worrying about dying of pc. I understand statistics enough to know that when it comes to dying, 1 in 380 are pretty fantastic odds whether or not you’ve ever been “diagnosed.” Especially when you compare it to something like heart disease (the nations number one KILLER … “killer” … got to love that PR machine) — where my odds of dying are greater than 1 in 2! We all have to die of something. I even exaggerated in my posts comparing biopsies and BPH surgeries. Its not that I lied or don’t believe what I said … I do … but if I decided I needed TURP surgery I wouldn’t hesitate for one second to find the best surgeon and have the operation. That’s because I understand statistics a little … and even if my odds might be 8X higher of eventually someday dying of pc they are still pretty low! When you come right down to it this whole PSA fiasco and debate was about moving that 1 in 380 odds needle (pun intended) on the cause of death gauge out EVEN FURTHER. The medical industrial complex PR machine says to get your PSA and your biopsies and your rp and then maybe you’ll move your personal odds right out there to 1 in a million!!! (But as S. Jobs might have found out too late, even 1 in a million odds can do you in). I honestly and truly believe that my research shows that following the PR machine’s advice will actually move the needle in the other direction because of the effects of treatment and yes, biopsies … albeit by some unknown amount yet to be truly determined. And when you add in overall all-cause mortality the picture looks even worse. And when you add in all the collateral damage (Murray’s millions of pc “survivors” it becomes nothing but obscene. WHAT A COMPLETE AND TOTALLY UNNECESSARY DISASTER! Michael had an excuse for falling into this trap eight years ago an he’s a brave guy for doing what he did back then. And then starting this website to provide info to help others put in the same position through no real fault of their own. Anyone with half a brain had to have stopped getting psa tests a couple years ago. After this USPSTF report comes out next week anyone who comes to this board with his PSA test numbers or biopsy results looking for answers is not going to get any from me. Some people are simply just beyond help.
Thanks Tony … sorry but I just posted without seeing your last post. Whether the task force report caves or not, the controversy has already been exposed over and over so many times in the past few years that by now the only people that will continue to get themselves trapped in this fiasco are the stupid … and unfortunately the infirmed (25% of 85 year olds are getting PSA tests) — both groups unreachable by logical argument and totally in the hands of their “for profit” health care “providers.” “Do no harm” … has been thrown by the wayside in the case of prostate cancer anyway … and in my opinion many other matters medical. As far as your comments on prostate biopsies — the “clear cut danger” is not the biopsy … its what comes afterwards. Good bye and good luck.
Anyone with half a brain had to have stopped getting psa tests a couple years ago.” Ed With all due respect, this is an absurd statement. We’re not talking about intelligence here, but trust. Most people don’t have the time to research medical issues and rely on their physicians to determine which tests are appropriate to run. You have made powerful and, to me, persuasive arguments that challenge the assumptions and motives of the medical establishment, and parts of that establishment are even coming to the same conclusions. But essentially calling people dumb who were not following or even aware of the data and simply trusting their doctors will only lessen your credibility in the eyes of others. That would be unfortunate because much of what you say has the ring of truth.
Bruce. What Ed’s saying has more than a ring of truth to it. I think he’s saying many of us we’re stupid for trusting for profit medicine. I’m in the same boat as you and I’m not taking it personally. In fact I am feeling pretty stupid right now. How can you trust a system that is PSA testing 25% of 85 year olds and probably biopsying many of them like Richard’s dad. I learned a lot here and will be asking a lot more questions at my next doctors visit. Thanks for a great site Michael.
Bruce Paul, you asked about symptoms of Flomax. Well, first of all, it has helped a great deal. I don’t notice any symptoms except a delayed ejaculation. I was told to expect retrograde ejaculation and not to worry about it, but that’s not quite it exactly, and for me, it’s hardly noticeable or something I care about. The other “side effect” may be that my blood pressure is lower, and since I was being treated for somewhat elevated BP (in the 135/75 range), it means I don’t always take the 10 mg. propopranol (Inderal) daily as my prescription indicates. (I check BP maybe twice a week at home.) What I really came on now to see if anyone has looked at the lead story in today’s (10/7) New York Times. Big headline: “U.S. PANEL SAYS NO TO PROSTATE SCREENING FOR HEALTHY MEN.” I think this is the game-changer. The same panel’s report on mammograms (one of my co-workers years ago called it “my annual medieval torture” elicited a lot of controversy, but I bet this one doesn’t. In the comments section of the Times, you see all the guys who think the radical treatments have saved their lives. Some of them I’m sure it has the majority of them just want to believe they’re alive and need to justify their pain and suffering. The money quote: “the test does not save lives over all and often leads to more tests and treatments that needlessly cause pain, impotence and incontinence in many.”
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Some interesting comments from this LA Times view on the USPSTF report coming out on 6/11/2011, ranging from the scare tactics of one urologist who says “Prostate cancer kills a lot of people. It’s not an innocuous disease. If they say just eliminate PSA, then a lot of people are going to die” to more rational calls to refine the test. But here is the clincher: Health insurance companies and Medicare administrators usually follow the task force’s recommendations in deciding which medical tests to cover. The question is how far will the final (after public opinion comments) report cave in from the pressure of the multibillion dollar prostate cancer industry? Too bad we can’t hear just ONE MORE comment from Ed! http://www.latimes.com/health/la-he-psa-test-20111007,0,4483814.story
OK you got it. Don’t know why you haven’t seen this. They didn’t cave: — http://www.nytimes.com/2011/10/07/health/07prostate.html?_r=1 —- I’m declaring the war won. Going home to celebrate victory and leaving this board in your good hands. Now looking for a good biopsy conspiracy board — to be with like minded people who are the only ones who know as a fact that the medical industrial complex embraces biopsies to cause more cancer to increase profits.
I asked my medical oncologist to read some of the recent debate on the value/danger of prostate biopsies. This was his comment to me: “In some specific cases such as renal cell and testes cancer, the biopsy can “spread” the cancer. In renal cell they probably have fixed it now using the Sheathed needle. Prostate biopsies have been done with a gun, so the cells can’t really escape the central core. This has always been the case. Most of the time when tumors spread by biopsy there would be local relapse. In > 30 years I have never seen tumor invade the rectum at the site of the biopsy. Studies have shown there is no increase in circulating tumor cells after prostate bx. For prostate therefore the risk is probably theoretical.”
Interesting discussion here re: biopsies. to Michael who talked to his oncologist its a great point that all biopsies are not created equal and neither are all cancers. Did he have anything to say about inflammation?
Michael – I would also be interested to hear if the oncologist mentioned anything regarding inflammation. I’ve always though the chance of spreading cancer throughout the body via a prostate biopsy is remote. However, I do wonder if traumatizing a small organ that already contains cancer might weaken that organs ability to keep the cancer “in check” .
Sounds like a written response so no chance for dynamic rebuttal. Also easier to just skip over the inflammation part. Its great that you got any kind of a thoughtful answer from someone in the business let alone an admission from a real m.d. that biopsies can spread some cancers (maybe even insulinomas). He says ” so the cells can’t really escape the central core.” What central core? No idea what that means? If there’s bleeding cells can enter the bloodstream and end up anywhere — lung liver brain bones. He says ” most of the time when tumors spread by biopsy there would be local relapse” — not doubting him here because I don’t know what he knows. But if its not pc where he says it never happens I would really really like to know what cancers he is talking about (so would most of the world). On the other hand I am doubting him here: “Studies have shown there is no increase in circulating tumor cells after prostate bx.” First of all, I like that impressive use of the shorthand for biopsy. Secondly, if he is so certain that its physically impossible to release pc cells by biopsy why would anyone waste money on “studies?” What studies are those anyway? I’d love the references. What equipment is used? What volume of blood is required to be submitted for analyses to ascertain with any confidence that a few tumor cells weren’t released by a biopsy? Its also kind of imprecise language for a doctor to use … “no increase?” Kind of implies pc cells are circulating in the blood all the time … which brings me to lastly: .IF THERE IS A TEST FOR PC CELLS IN THE BLOODSTREAM WHY THE HELL ISN’T ANYBODY USING IT? Sounds like it would have to be a lot better than the PSA? OK … I’m going …. I’m going. And I’m not coming back. This is no empty threat. Don’t answer for me …. answer for Murray.
Yeeeeeeeeehaaaaa! I love it. I love it! You tell em Ed! And then you tell em back Michael! Call up that m.d. and get those study citations and embarrass the hell out of old Ed. Shut him up once and for all. Post em right here for all us lurkers and all those men you been advising to get biopsies to see. Ed is right about that imprecise language though its not what you want to see in an oncologist and if he doesnt deliver the goods on those studies I dont know if I would continue to leave my life in the hands of a lying bastard. Studies that show tumor cells circulating in the blood and then they dont increase after a biopsy. Thats great and I’m happy about that but I’d like to see it myself in black and white and maybe theyre already posted in the studies section of your website and Ed has already made a dumb fool of himself. If they arent they should be seeing as how you been advising people to keep getting those biopsies. I’m going to go check on that right now.
Concerning the last few posts in response to my doctor’s take on the biopsy issue: I did not post his comments to counter or undermine Ed. I value Ed’s opinion and I don’t know who is right. I don’t like getting biopsies and want to have as few as I can. It is possible I might not have another for years. For now, I trust my doctor (he was the only one who would back me on WW eight years ago. As to inflammation, I did not ask but will do so.
This will be in Sunday’s NY Times: Can Cancer ever be ignored? http://www.nytimes.com/2011/10/09/magazine/can-cancer-ever-be-ignored.html
Same article as below without NY Times log in rigmarole: http://newamerica.net/publications/articles/2011/can_cancer_ever_be_ignored_58591
The news today forces me back for one last encore … if only for Murray’s sake …even billionaires allow themselves to put in the same position. Steve Job’s pancreatic cancer was found “During a routine abdominal scan, doctors had discovered a tumor growing in his pancreas.” (ROUTINE SCAN — READ ROUTINE PSA TEST) The tumor found was an insulinoma. “Although the most common type of pancreatic endocrine tumor, insulimonas are extremely rare. The most famous American diagnosed in the last several years with an insulinoma is Steve Jobs, founder of Apple Computer.” Insulinoma’s are usually benign. “Insulinoma: Facts.” “Less than 10% are malignant. ” “The incidence in general population is 1-4 per 1,000,000 yearly but the incidence is higher in autopsy studies.” So his tumor was rare, usually benign and since the incidence is higher at autopsy many people live and die never knowing they had it. “That night, after a biopsy, the doctors realized it was a very rare form of pancreatic cancer…” He eventually had surgery (CUT IT OUT). Liver metastasis. A liver transplant. And now he’s gone. It all started with “a routine abdominal scan” and a BIOPSY. I contend that there’s a good chance he might be alive today IF HE HAD NEVER KNOWN. You see any similarities here? We report. You decide. Do your own research. The medical establishment doesn’t always have all the right answers … even for billionaires.
in re: the Times article: I find the implication that the U.S. Preventative Services Task Force was intimidated into not releasing its conclusion on PSA testing interesting to say the least and criminal if true. Big money talks!
Clarification for those that need it and then I’m gone again. Of course this is a circumstantial case pieced together from news reports. Jobs had no symptoms. Insulinomas have symptoms when they are big enough to cause them — its hypoglycemia. Jobs was getting a “routine scan” or maybe a full body scan which was popular at the time or whatever it is billionaires do to try to “catch cancer early” and live forever. Who knows? If he had not had the scan, maybe the insulinoma becomes big enough to cause hypoglycemia or maybe it doesn’t (its found more often in autopsies than clinically — (as high as 10%)) — but IF he goes for a scan WITH SYMPTOMS — the situation changes. Any half way decent doctor can put two and two together and tell you you have an insulinoma and he can send you right to the OR to get cured. When they find something on Jobs scan they all assume he has the more common dangerous form (which also has no symptoms in the early stages) like Swayze or Michael Landon and he thinks he has only months to live. So they tell him they need to do a BIOPSY to be sure because there are other things it may be although the chances of that weren’t good. He says he cried after the doctors told him it was the rare “curable” form. He didn’t even rush into any surgery — some reports say he tried diet and herbal cures for a while. But meanwhile the BIOPSY was doing its dirty work — inflaming the tumor or already seeding metastasis. By the time he had surgery it was too late. BIOPSY induced micrometastasis had already begun or possibly surgery on an inflamed insulinoma is more dangerous than one that isn’t. Circumstantial for sure but no doubt men have been sent to the electric chair on lesser circumstantial evidence. With full access to his medical records I think someone would have little trouble getting an involuntary manslaughter conviction in the death of Steve Jobs. Jobs was forced “all in” by those “routine scan” results. — after that he had no real choice but to keep playing and hope to catch that hole card and get out of the game alive. Instead the routine scan began the long medical cascade that ended tragically yesterday. Apparently sometimes you can catch cancer too early. Obama’s comments on his passing notwithstanding, I think its more horribly ironic as well as pathetically sad that one of the greatest visionaries of modern technology was himself probably done in by modern technology.
Its amazing how different people can look at the same picture and see different things. That must be why eyewitness testimony is so unreliable. I’m thinking thats because we are all biased by our life experiences. I’m thinking of people like Murray and Ed and Alan. I guess Murray likes his shoes so he suspects Frank Zappo didn’t get his PSA tested early enough and then there’s Ed who thinks his elderly dad was screwed by a money grubbing doctor and Alans pissed because he thinks he’s the only one of 5 brothers whos getting shafted by pc Which by the way I don’t know why somebody especially Michael didn’t challenge his baloney about diet and exercise lowering his psa from 5 to 1.5. Doesn’t matter if he still has the cancer but kind of says that if thats true which I don’t think it is if you are already healthy and eat well and exercise you shouldn’t feel good about a 1.5 PSA because you might have a lot of cancer like Alan and you wont ever know it. Maybe thats what happened to Zappo and if what Alan says about his changing PSA’s is true than it only says PSA’s are even more useless than they ever were. Talk about bias even Dr. Prostate Remover Walsh in one of these articles somebody posted talks about watching his favorite uncle die of pc when he was a kid. Now Larry wants us to read yet another of the thousands of books out there on pc which Murray probably will and Ed probably wont and neither will Alan because he’s good to go now that hes got Michaels opinion. I think I know that I’m not going to find any answers in that book or on this board so I’m out of here too. But I did learn something and that thing about BPH surgeries scares me a little. Good luck to everybody.
I checked out Larry’s book on the internet and it appears to be a doctor trying to sell a miracle cure through supplements. My opinion is that people should do their best to inform themselves. So they should consider their own doctor’s opinions, read Dr. Walsh’s book, read anti-surgery books such as “Invasion of the Prostate Snatchers” , join a support group and listen to their experience, consider Ed’s point of view, visit sites such as this one and Yana, and ask advice from prostate cancer forums. After that all they can do is try to make the decision that best suits their objectives.
What an amazing field of medicine. You SHOULD be PSA screened at 40 to get a baseline, or in the least MUST be screened at 50. If your PSA is >4 you MUST have a biopsy, unless it is >2.6 because maybe thats the proper cut off. In any even then you doctor will give you a choice: surgery or radiation or cryo or proton beam…..YOU KNOW….whatever you feel is RIGHT FOR YOU. That’s right…YOU do the research…you make the decision but by all means…write those checks to THEM!
Considering that many people are being aggressively treated due to a process that started with high PSA results, I think the study can be extrapolated further to raise question regarding the efficacy of aggressively treating so many people. Am I wrong? On a personal level, I’m still muddling through and trying to weigh contradictory evidence and opinion. If I take a stance against widely accepted expert medical opinion, then I have to carefully consider that position. I want to keep my quality of life but I also want to be around to see my children get married and eventually experience being a grandparent. One never knows if they’re a Frank Zappa or a Terry Herbert. Would Frank Zappa have lived longer if his prostate cancer was found and treated 5 years earlier? Or is aggressive cancer going to be aggressive regardless of treatment? I don’t know the answer. I suspect he may have lived longer. But how long and at what price? It’s a tough decision.
Regardless whether I have prostate cancer or not, I am glad that I made the decision not to have a biopsy, and I do not plan to have another PSA test. As I said, if I die of PC, I die. Big deal. At least till then I can live happily and normally with my usual functions. (And my urinary problems have been pretty much resolved with Flomax, I’m happy to say.) When I saw this in today’s NY Times, I’m even gladder that I didn’t have a biopsy even though my dad, who was fooled into having one at 85 (no cancer at all), said it was “a nothing procedure.” It’s not “nothing,” as the Times notes: A prostate biopsy more than doubles the risk of being hospitalized for infections and other medical problems within the following month, a new study reports. Researchers examined Medicare records of 17,472 men, average age 73, who had prostate biopsies and those of 134,977 matched controls selected on a random day. Then the scientists compared hospitalization rates in the two groups over the next 30 days. Among the controls, 2.9 percent were hospitalized the rate among the biopsied patients was 6.9 percent. Excluding men hospitalized for prostate cancer treatment made no difference in the results â€? it was biopsy alone, not treatment, that led to hospitalization. In every prostate biopsy, there is a risk of introducing bacteria from the rectum into the prostate, and resistant strains can cause serious problems. The authors estimate that a randomized trial would find that one in every 24 biopsies results in a hospitalization within one month. Patients having a biopsy should have a full discussion about recent antibiotic use, recent hospitalization and anything else that might put them at risk for having resistant organisms, Â? said the lead author, Dr. Stacy Loeb, an instructor in urology at New York University. But if you are an otherwise healthy man who would benefit from treatment, you shouldn ™t be afraid to have a biopsy. Â? The report appears in the November issue of The Journal of Urology.
Richard, thanks for the new information on biopsies. Re: flomax, I have heard of side effects. What is your experience?
A new book about PC by Aaron Katz MD entitled “Prostate Cancer” discusses many of our issues. Only $10 on Amazon.
Jim G – Did you not find the study interesting? I guess I fail to see how a study that seems to show that mass PSA testing does not significantly reduce prostate cancer deaths would not be appropriate for a watchful waiting forum. As for making Ed’s case, I’ve already stated that I appreciate Ed’s contribution and agree with much of what he’s said. I would have preferred that he had stuck around as he provided a provocative and unorthodox viewpoint in an intelligent manner. Regarding PSA however, I would make the distinction, of mass PSA testing of asymptomatic men and PSA testing of men who have some of the symptoms of prostate cancer (or have prostate cancer). I come to forums such as these to exchange information and while it would be boring if everyone was always in agreement, I prefer that the discourse fall under the category of “friendly discussion” . Prostate cancer has introduced enough aggravation into my life that I don’t feel the compulsion to seek it elsewhere.
Quote from Murray: “I would make the distinction, of mass PSA testing of asymptomatic men and PSA testing of men who have some of the symptoms of prostate cancer (or have prostate cancer). ” Isn’t that the crux of the issue, that there are NO symptoms or that they mimic other prostatic conditions or diseases with no way for a definitive diagnosis other than the ‘general admission’ ticket for the PSA test and then ‘reserved seating’ on the biopsy table? The only urologist I ever talked to that seemed honest charactarized the decision making process as a “crapshoot” but is biased towards the biopsy. I am: 60 y old, average PSA’s over 3 years: 5.4, asymptomatic, negative DRE, never had a biopsy.
Tony, I am in the exact same situation as you, will be 60 next month and last psa 5.4, normal DRE, no symptoms other than urine flow not what is used to be (who’s is the way it used to be?) I’m not having a biopsy because: 1) the chances are it will be negative 2) even if it was positive, I would probably be better off without treatment, give that we now know that treatment is shown to be benficial in maybe 1 out of 48 men treated and the mortality rate of treated vs. untreated is either not improved or only marginally improved 3) there is a possibility that having the biopsy will inflame the prostate and either induce PC or aggravate an already-present PC. Particularly relevant is the study Ed mentioned recently about men who have had surgery for BPH being 8 times more likely to later develop PC, and other studies that implicate inflammation as a causal factor. Then there is the possible spread of PC into the blood because of the biopsy itself 4) the possible side effects of the biopsy re: incontinence, infection, etc., though supposedly rare can be a factor. I can only blame myself for not doing any research when I started the psa testing regimen, trusting that the doctors knew it was a valid diagnostic tool. There was never any mention of the many weaknesses and downsides of testing and the unnecessary treatments it can lead to. At any rate, though the biopsy is out for me, I now have to decide whether I will refuse psa testing for good. I am leaning in that direction. Good luck with your decision making, Tony. Obviously, there are many ways to approach this and I am not claiming to have all the answers by any means. This entire subject is ambiguous and a “crap shoot” as your one doctor said.
Murray its not appropriate because it because Tony said it better than me and I know I shouldn’t but I’ll be repetitive anyway. All the ads for PSA screenings say pc has no symptoms until its too late and thats why you have to go and get yourself tested before you have symptoms so you can save your life. You’re harping on symptoms or no symptoms because you had some symptoms. If what they say in those ads is true then its illogical for you to argue that a study comparing screening and no screening in only men with symptoms would show benefits because it should already be too late for everybody before the study even started. I think somebody is lying to us Murray. Thats because you can scare most of the people most of the time and every man like you who has any urologic symptom first thinks he might have cancer and he runs to the doctor to rule it out and then he finds himself in the game for the rest of his life. Bruce its not eight times more likely to develop pc its eight times more likely to die of pc. Its die of pc. All of us are going to develop pc.
Here’s an interesting study that suggests widespread PSA testing may provide little value. http://www.bmj.com/content/342/bmj.d1539.full “Conclusions After 20 years of follow-up the rate of death from prostate cancer did not differ significantly between men in the screening group and those in the control group.” If I could make a few general unrelated comments. I know that I may appear to go back and forth on these issues, but I do draw a line between mass screening of the general asymptotic population and those with confirmed cases of cancer. As well, for someone such as myself who has been recently diagnosed, analyzing and keeping an open mind to various opinions is probably a healthy thing to do. I enjoy “stimulating discussion” but I generally find it frustrating on forums (not just this one) that disagreement tends to become overheated which generally shuts down informative discussion.
Murray- I think you are asking the proverbial $64,000 question, appropo here as that is probably the high end of the average cost of treatment for five years after a primary diagnosis. Thats “just” the financial aspect. The psychological and morbidity costs of the treatment choices are sometimes immeasurable. Who should be (PSA) screened and why? The proponents seem to say EACH AND EVERY male over the age of 50, 40, 30…etc., not only those in the “high risk” groups. Assuming those statistics stating that 12% of all men over the age of 40 have some degree of prostate cancer, diagnosing all of them would yield over 8 million cases in the US! That yields a total mortality rate of about .6%, obviously caused by the lethal strain of the disease. The question is, how do we get to THEM and not the rest of us without inflicing widepread harm as is done now?
Murray wrong forum for that study. Too late for us. You’re risking being thrown off this board. You’re making Ed’s case for him now that he’s gone. Nobody wants to hear it. I’m sure that there were plenty in the group randomly assigned to not be screened just like us and worse even Gleason 6 and 7 and 8 and 9. No PSA tests means no biopsies and that means no cancer diagnosis and we all get to live our lives happily ever after and just as long as the schmucks who got screened and treated and wear diapers if they didn’t die on the operating table or from the biopsies. Too late now. I like that poker analogy. All of us here are already in the game. Either we keep playing BIOPSY BIOPSY BIOPSY until our number comes up and we get to go and join one of your survivor groups or we get up and walk away from the table which is hard to do because the house has by the balls. I like this P.S.A. = Physician Scam Activity. Aren’t doctors supposed to read that stuff and then stop screwing us out of the rest of our lives.
This is for others on this site. I’m sorry Alan is as angry as he is and I’m certain that now that he has Michael’s opinion he’s moved on and won’t be reading this — but if his PSA is now “stable” at only 1.5 and his biopsies show that much cancer — if I were one of his brothers — I wouldn’t be reassured by normal PSA levels. This is just another anecdotal indication of the unreliability of PSA testing. If not for the chance timing of his of his 5 PSA he might not ever have had a biopsy and been put in this position. And while he might not “know the stats” — its a proven fact the risk of pc is 3X higher if one first degree relative was diagnosed before age 65 and — “If two or more first-degree relatives are diagnosed at any age, then your risk of prostate cancer increases to over five times that of someone with no family history.”
A forum should be a place for debate and the exchange of ideas among many. I don’t know why anyone would want to limit that. Let the chips will fall where they may. I’m on the fence too. I love to hear a good argument. Both sides. I’m disappointed no one including Michael has stepped up to refute Ed’s with equally weighted facts although Murray made a good try. The closed minded who post are obvious for all to see. Alan if you just wanted Michael’s opinion there was no need to make a horses ass of yourself in public he’s provided an address to contact him directly Contact@WatchWait.com
Thanks Michael, I will be 70 in Nov. Regarding the biopsy, I am certain that I would NOT opt for any treatment if they did find low-risk (Gleason 6) PCa. If the Gleason was 7 or more, then I would have to rethink it all. Thoughts and opinions are really welcomed. I am trying to sort through all of this crap!
Its not that I don’t blame Alan for being angry. He has every right to be. But It will never be directed where it should be (to the people who put him in the untenable position he finds himself in) because at this point he’s already been forced to go “all in” to use a poker analogy. He can’t get up and leave, they hold all the cards and his fate is in their hands. He’d been led to believe that he could win at this game (like neon signs in Vegas flashing early detection saves lives early detection saves) so he sat down at the table to play. He bought his way in (with his PSA) and like many others he has now been sucked into a pot he can’t possibly win. This is where Michael was 100% right in (too nicely) telling me to find somewhere else to post. People come to this sites like this looking for some reassurance, comfort and hope … maybe a story about someone who was holding a similar hand and who caught that hole card on the river and beat the house. The last thing they need to hear as they are waiting for the final cards to fall is someone not even in the game, standing on the sidelines, taunting them, for being so stupid not to realize that the game was rigged against them from the start. You can be assured this is my last post here ever.
I do agree with much of what Ed says I think that too may surgeries are performed and I suspect biopsies may pose a risk of inflaming the cancer. However I cannot support his view regarding treatment never being applicable. Here are what I understand to be indisputable facts: – The higher the Gleason grade the more likely the cancer can metastasize to other places in the body. For example, it is questioned whether Gleason 6 can survive outside the immediate prostate area but Gleason 8,9,10 can metastasize. – Gleason 7,8,9,10 started at one time as Gleason 6. – Some men diagnosed with Gleason 6 are actually shown to have a higher grade after the pathology report from a prostatectomy. – More advanced (Gleason 7 or higher) prostate cancer seems very susceptible to spreading to the seminal vessels, bladder and bones. Now as I understand it, Ed believes that prostate cancer is either aggressive or non-aggressive and treatment makes no difference. However, I find it unlikely that, for example, a Gleason 7 cancer is not often entirely contained in the prostate and eradicated with a treatment. In fact, long term survival rates seem to bear that out. (I realize that the cure rate is not 100%.) As I’ve also mentioned, there are mentors in my prostate support group who’ve had Gleason 8 and 9 cancer that had spread to their bones, who are alive, able-bodied and in relatively good spirits 15 years after the prognosis. I think the chance that they would still be alive without treatment is minimal. So I suppose to sum up, all I’m saying is that while watchful waiting may often be appropriate, I don’t think this is a disease to be ignored.
Murray it seems to me Ed summarized your dilemma perfectly. You paid for your early detection to save your life. Your doctor delivered and gave you your early detection. You got what you paid for. Now what are you doing here? Why don’t you just go ahead and and get cured? Instead you are here sighting your studies and parameters and books to read and this and that and asking your questions? I think Ed’s biggest point is the fact that just because you are here you must know deep down in your heart that somethings rotten in Denmark. Otherwise why not just do what your doctor tells you to do? He’s who you went to in the first place to get your life saved. Michaels not a doctor he’s just somebody in the same boat as you as are most of the people who post here.
Murray, thanks for your previous advice about assuming I have PCa and enacting lifestyle changes along with periodic PSA tests to monitor “the situation” , I am doing just that. ED: I hope you continue to be allowed and inspired to post. People are free to skip over your comments. As far as repeating yourself, I would rather weigh ALL evidence than what I seem to hear from what I hear the DOCS mantra….”Biopsy…biopsy…biopsy”
To Jim G. I do agree with much of Eds distrust of biopsies and the overuse of PSA testing. (I was not asymptomatic when I went for my PSA.) I also agree that this likely leads to many unnecessary surgeries and radiation treatments. My only point is to question advice saying that treatment should never be followed, even among Gleason 7,8,9,10 patients and that Gleason 6 patients should not even monitor their PSA levels. IMO those following such advice should carefully consider the potential ramifications of that stance.
I think he was pretty clear about saying his dad probably had Gleason 6,7,8,9 and 10 cancer which didn’t happen overnight and he didn’t have to spend his last 30 years in a cancer support group with a bunch of old men in diapers because PSA testing wasn’t around when his dad was younger. You have your mentors but since dead men tell no tales all the people who were treated and died arent around to mentor anyone not to follow in there footsteps.
Thanks for the forum Michael (I’ve been kicked out of better places than this 🙂 ——— Hang in there Murray …
Richard – If you are going to follow this course, I would suggest that you do 2 things. #1) Assume that you have prostate cancer and make diet modifications that are believed to be helpful – lower or eliminate meat consumption (except perhaps omega-3 fish), increase soy, eat mostly a vegetable based diet that is especially high in cruciferous vegetables and take vitamin D and perhaps other supplements. (Google study done by Dean Ornish and check out suggestions on this site.) #2) I would at least continue with PSA tests. If your PSA rises dramatically, you may want to reconsider your course of action. Just my suggestions and of course it is your choice. I myself am currently debating the same issues.
Another suggestion I will toss into the mix is to read a book called, “Foods that Fight Cancer” by Richard Beliveau.
I’ve been lurking here for a few weeks and learned a lot mostly from Ed. Its curious to me that Michael had no comments about any of Ed’s provocative posts except to tell him enough. No comment on anyones post about being pushed into biopsies. Michaels comments just restate over and over that no on dies from Gleason 6 cancer. Talk about repetitive. His only advice to someone suffering retention of half his urine was to enjoy the next twenty years. Looks like he would rather have this forum be typical of all the others. A place for men like him to commisserate about the awful position they find themselves.
Michael, thanks for the quick reply. The answers to your questions are as follows (I will try to be brief). 1) My PSA is “abnormally normal” . It was 5 in ’07 & is now stable @ 1.5, which I attribute to a 20lb weight loss, diet changes & exercise. This still doesn’t change the fact that I have too many positive cores & too much cancer in them. In fact, I read that the PSA of 1 in 4 is not a reliable gauge of their PC. I seem to be in that category. 2) I have had 4 yearly biopsies (a 6, two 12s & an 18). The 18 had 4 cores, but it was 1 (5%) in the left mid lob & 3 (all 30%) in the left base. The last biopsy was the 12 core (4 positives – 2 in the left mid lob & 2 in the left base – with 45% cancer in all of them). While it seems like it is getting worse, my oncologist believes that it could just as easily have been 45% all along, with the latest %s reflecting better needle placement. (This biopsy was done by a different Dr.). Still, he felt that in all likelihood, it is a combination of both. The bottom line is that I was “comfortably” WW, but now I am uncomfortable. Micheal given all the facts, would you be? Thanks for your time.
Jim. I don’t need that kind of help. Michael is right I do tend to get repetitive and get carried away. Right now I’m trying to keep Murray from doing something stupid. Read this from the NYTimes in 2002. Even more true today since the referenced studies have been updated and new studies completed. http://www.phoenix5.org/articles/NYtimes091702treatment.html — Then read this m.d.’s blog. He’s also saying that the medical establishment has got this all wrong :http://mdwhistleblower.blogspot.com/2009/07/prostate-cancer-screening-stop-psa.html
@ Jim I believe I have posted before that I think there is much truth to what Ed says. There is too much PSA testing and too many biopsies. I have learned a lot from him. I just feel uncomfortable advising people not to have biopsies. I don’t know the answer to this dilemma. I still have them, but only every 2-3 years. I’m not sure if I will continue. Ed has got me thinking. @ed I appteciate your posts and don’t necessarily disagree with you. I want to continue to see you post, but just make them shorter.
@ Alan Your situation to me seems borderline. I’m not sure what I would do. Maybe keep monitoring and hope nothing gets worse. I wish I had the answer for you. I still think you have time to keep searching for an answer.
For Alan … no advice from me … just to let you tell you that I have PC too … for all intents and purposes. I’m 59. My younger brother (18 months younger) was diagnosed a few years ago at 55 with numbers eerily similar to yours. We look alike, have similar physical characteristics, we’ve had similar lifestyles and diets … in fact when we were younger we were often mistaken for twins. My father’s secondary cause of death at age 89 (there are 3 available on the form) was PC. His last PSA’s were in the 100’s, indicating likely metastasis. Heart disease (the nations number one killer! ) just got to him first. I am well aware of the statistical odds — and the odds are that if tested and biopsied my personal “numbers” wouldn’t be much different than my brother’s … or yours. So my brother and I are now conducting our own mini “twin study” (I’ve talked about it in previous posts — about the “observer effect”. Its underway right now. “The Possible Effects of a a Single 12 Core TRUS Biopsy on PCa Progression and Survival in Genetically Similar Siblings.” — although we’re both hoping to meet the same [longevity] fate as our dad.
Scheduled for biopsy Oct 11th. PSA history is as follows: Date PSA May-08 2.1 Apr-09 3.3 May-09 2.9 Apr-10 3 May-11 4.3 Jul-11 5.5 Sep-11 5.6 Thoughts would be hugely appreciated
Additional info: I will be 70 yrs old in Nov. and in excellent health
To Michael: I appreciate your frankness. Even before your last response, I pretty much new what you would say because I have never seen you use the words “probably ok” & “troubling” before. My head is not in the sand I know that my days of WW are probably going to be over sooner than later. It was just good to get a 2nd opinion, even if that opinion just reinforces what I am already coming to terms with. P.S. I have been holding out hope for a breakthrough in genetic testing, but it seems to be a case of so close, yet so far away. If you have any updates in this area, I would be glad to hear of them. Otherwise, I wish you all the best as you continue your AS. To Ed: Couldn’t help yourself, could you? That’s OK. I can’t say that I am surprised. I will only say this. I am one of 5 brothers, 4 of which were born one year after the other. All were tested after my diagnosis and none have an elevated PSA. So, respectfully, I think it is a little much to say that you have PC too (and I don’t believe your Dad changes that. He was 89 for God’s sake. How many old men who have died of other causes have been found to have some stage of PC. I don’t know the stats, but I believe the answer is MANY!). I know you will want to respond. Go ahead if you feel you must, but I am not interested as I previously stated.
@ David. Your PSA is increasing so i guess I would have a biopsy. How old are you?
Murray. I offered this study to you ONLY to refute your doctor’s claim about autopsy findings. YOU SAID HE SAID — and I quote: “most of those cases would be undetectable by biopsies and under 1%.” “Under 1%” … that’s pretty specific … sounds impressive … sounds like someone who’s on top of things, done his homework and knows what he’s talking about. But in this study they did the same kind of needle biopsies you had and they “detected” plenty of cancer” … even high grade pc … in men who were not cancer patients … so much cancer that I think I can say with some confidence that your doctor is very wrong about the “undetectable by biopsy” part of his claim. After the biopsies this study followed-up with full pathological analyses of the biopsied prostate glands — like they might do during a normal autopsy or a pathology lab might do to your prostate after it was removed by RP. The only purpose of this study was to check the accuracy of the biopsies they had taken. Towards developing guidance to help doctors improve their biopsy sampling techniques.. A really nice study. Now you seemed to have changed the characterization of what your doctor said. Somehow “undetectable by biopsy has “morphed” into “clinically insignificant” cancer. Two different animals. Yes — if you are now saying that your doctor said that most autopsy findings of pc are “clinically insignificant” — I would wholeheartedly agree with him — but so are most biopsy findings (including yours by the way — as defined by the particular parameters of this study). So what? No argument there. In your last post you may have also accurately listed the findings OF THIS PARTICULAR STUDY (I didn’t check your cut and paste) … but your mistake is thinking that those findings have any statistical relevance to anything. You cannot extrapolate the findings OF THIS PARTICULAR STUDY to anything. Not to all men 60 – 70 years old. Not to your case … not to any case. Nor can you make any meaningful inference at all as to the incidence of PC in the general population. Those particular findings of this study are an interesting sidebar — nothing else. If for some reason you want to pursue this further and you are for whatever reason really interested in verifying the true prevalence of pc found on autopsy, clinically significant or otherwise, maybe to try to verify your doctor’s claim that most of it is under 1% — and maybe take him to task for lying to you — you might begin your research with the referenced autopsy studies cited in the footnotes. Your doctor might just be right. I haven’t researched it that deeply myself. I kind of doubt it though. Since he was so wrong about it being undetectable. I guess it could possibly be true for 20 year olds. But 80 year olds? Very unlikely. Anyway. Let us know what you find out.
Thanks for the detailed response Ed. To be perfectly honest, I can’t remember for sure if my doctor actually used the words “under 1%” . It may have been more along the lines of him saying they were likely insignificant or microscopic and perhaps I inferred that. He was also my family doctor and not my urologist. Perhaps I’ve been guilty of fishing too hard for information proving that clinically significant Gleason 6 is relatively common in my age group.
Very interesting posts about “discussions” with urologists. I have been to 2, sent by my Internist because of a “high” (average 5.4) psa over the past 4 years. All 3 docs found a negative DRE. Both Uros said a biopsy was mandatory to “confirm” an accurate diagnosis. As for any discussion, the first arrogantly asked me “what did you read” and the second reminded me of his training and that he was in a better position to prescribe a course. Both said something to the effect that while they didn’t necessarily think I was stupid, I would be foolish not to have a biopsy. Both would not let me leave the office without setting up an appointment for the procedure. These visits were a year apart. I cancelled both, the later was set for this Monday. Yesterday I received a curious unsigned letter from that office, stating that I canceled the appointment and was putting the “control of my prostate cancer” in jeaopardy! The letter is typed ‘Certified Mail’ but was sent thru the regular post. Nice to know I have cancer without even being diagnosed. I almost feel this is intimidation. Anyone else with an experience like this?
Yes, I had a very similar experience which I partially described in an earlier post a couple of weeks ago. I too had a last pas of 5.4 and was told by urologist that “you have to have a biopsy.” This is with no symptoms and normal DRE. When I refused to set up the biopsy I received a registered mail letter that required my signature acknowledging that I was refusing biopsy. The office I went to was run like an assembly line. I spent much more time with assistants and submitting to questionable procedures than the few minutes with the Dr., who performed the DRE, looked at the psa results, and that was enough. No probing questions or effort to determine what may have caused the sudden rise in psa. Just do the biopsy. Well, I have read enough by now to believe that I will probably never approve a biopsy. The general flow of data coming in over the past few years argues against it. There is no way to know for sure whether this is the correct way to go, but I refuse to get on this never ending merry-go-round unless there is compelling scientific evidence to support it. I think the psa testing regimen was instituted before they had any clear idea of its value and it has probably done alot more harm than good. Just my opinion.
This is for Michael.** **Ed, please do not respond. We all know what your opinion is. I want to hear from someone who HAS prostate cancer and is practicing active surveillance. Thank you.** Hi Michael. My last 12 core biopsy showed cancer in 4 of the cores (2 in the left mid lobe & 2 in the left base), and 45% of all the cores had cancer. I’m a Gleason 6 and am 55 years old. To Murray you wrote: “I don’t know all your details (how many cores were positive? What percentage of the positive cores had cancer? etc) but you have many years to go before needing any treatment.” So, having given you my core info, I would appreciate knowing what you would do, or at least, what you think you would do if you were in my shoes. Thank you!
@Alan As long as your Gleason remains a 6, you are probably ok. No one has ever died from a Gleason 6. That said, the fact that PC was found in four cores is more troubling than if it was only found in two, as has been my case. What is your PSA? Is it stable? How many biopsies have you had? Have the results gotten worse? Or was this your first? Id probably keep monitoring and maybe have another biopsy in a year, to see if things are stable.
@ed Do you think you can give it a little rest, or at least keep your posts to a few paragraphs? I appreciate your position and it has given me a lot to think about, but you are starting to repeat yourself. Maybe you should start your own site. Otherwise, i may have to delete or edit your posts. Which I don’t want to do. Thanks for cooperating.
Thank you for the information Ed. Unless I’m misreading the report it seems to confirm my family doctor’s feelings. Of 164 men 47 or 29% were found to have cancer. But only 20, which works out to 12% had a clinically significant cancer. And this is from an age group of 57-73 year-olds. Then it goes on to say that only one of the men under age 60 had a clinically significant cancer. I will say that my instincts (for lack of a better term) lean towards much of your position. I believe that PSA tests are becoming very overused and I can’t see how constantly punching twelve holes into an organ the size of a walnut couldn’t be damaging and potentially inflame the cancer. But, of course, what I struggle with is that I go to these doctors because they have an expertise that I lack. Your position (and one that I sympathize with) basically says that practically the entire medical profession is completely wrong on this issue. Now this has happened before as was the case of routinely removing tonsils when I was a child, so it could be happening again. One area where I do part company with your thinking is that no men should receive treatment. I think you may have a point with most asymptomatic men, but if someone is, for example, peeing blood, has a constricted or painful urine flow or other serious symptoms I would think they need treatment. I know there are a few men in the prostate support group who had fairly advanced cancer perhaps 15 years ago and are now in their late 70s and doing reasonably well. They may have made some sacrifices but given the advanced progression of their cancer, I don’t think they would be alive today without treatment. Just of few of the thoughts that I’m wrestling with.
Yes Murray you are completely misreading the report. You said your doctor “claims most of those cases would be undetectable by biopsies and under 1%.” They did the same kind of needle biopsies on in this autopsy study that they did on you and they found lots of cancer greater than 1% and lots of cancer greater than Gleason 7! This was a study to determine the effectiveness of biopsy procedures — not the prevalence of cancer in specific age groups. You’d need a much bigger sample size to do that. Sorry … but you need a course in statistics and maybe risk analyses. It might help with understanding these studies as well as discounting the stories of old men in pc support groups — anecdotes are not science It also would help with discounting my passionate position on this issue and increase your own confidence in making a fully informed decision on your own. As far as the complete medical establishment being “wrong” on this issue — it would be far from the first time. I’ve put out there for all to see and read the best ever pc article ever written. By Stanford Professor Emeritus of Medical Ethics and M.D. Dr. Robert Mc Cauley. He (not me) said that the entire medical profession was wrong on this issue more than 15 years ago. He has been proven right in study after after since then. Ideas become entrenched in thought and practice and are difficult to turn around. And change comes slowly when financial interests are at stake — but its coming. This month has been about the quietest “Prostate Cancer Awareness Month” I’ve seen in the last ten years. I’ve been on this bandwagon for about 15 years too — since the time my 85 year old dad was obscenely first diagnosed and then treated for pc by an m.d. who was taking kickbacks from the drug company for the drug he was obscenely and unnecessarily injecting into my dad. How’s that for an old man story? It destroyed my trust in your medical establishment. (I might ad that I haven’t changed many minds) Fortunately (or unfortunately) you are young enough that I am fairly certain you will see the change in pc diagnosis and treatment protocols take place — I sincerely hope that deep regret will not be one of your “old man stories.” All the best.
I’ve been trying to locate the paper written by Dr. Robert McCauley, referenced by Ed, but no success so far. If anybody is familiar with it or knows a site where it can be found, please advise. Thank you.
For Bruce. Thanks for the help. And you’re thinking in the right direction … but (and no offense) … (maybe a statistics course too 🙂 … population increase and actual deaths are not what you want to look at here. What you should look at is the pc death “rate.” In any event I don’t put much faith in the “systems” input to those numbers. PC deaths are relatively few and it wouldn’t take much of a recording error bias to move them a percentage or two one way or another. If you’ve ever seen the inside of a hospital’s (where most die) bureaucratic paperwork morass you would know that getting making sure the deceased insurance pays up is 1000X higher on the order of precedence over accurately filling out a government COD form. Annual death statistics are good for what they are — inaccurate approximations.
For Bruce: ———- http://www.issuesinmedicalethics.org/043mi074.html
Thanks for these great posts! For Bruce: here is a link to McCauley’s paper. For “some” reason it is hard to find, but in an Indian Journal: http://www.issuesinmedicalethics.org/043mi074.html For Ed: Suppose the DRE is suspicious, a palpable lump. Do you still do nothing? wouldn’t a a targeted biopsy make some sense? Thanks
For Jess. As I’ve said before I think that this study will be seen as a landmark ( http://www.medpagetoday.com/MeetingCoverage/ECCO-ESMO/28719 ) and will likely eventually provoke a sea change in thinking about the danger of biopsies. Now predicting when, if ever changes might be implemented in clinical practice is another thing. In any event I challenge you or anyone reading this to do this this test. Print out a copy of that summary and bring it with you to your next meeting with your urologist. Keep it in your back pocket. Bring it up at some point in the conversation — possibly something like “did you see that new study out last month about BPH surgeries and pc?” If he says “no” — give him a point for honesty. I will be shocked if he says yes … but if he does ask him what he thinks of the findings. Carefully scrutinize his answer to make sure he’s not just BS’ing. See if he knows the 8 times higher death number or in what journal it was published. If he does — then you’ve got a great doctor you can probably talk to. If he doesn’t know and tries to BS you — walk out — you don’t want anything else to do with him. If your doctor said “no” — pull out the summary and give it to him. If he seems curiously interested — he gets another point. He may imply that he’s too busy to read it now but that he’ll get to it. That’s OK — doctors are busy people. Now if you are lucky enough to have a doctor who you can at least begin to talk to — one who keeps up with the latest goings on in his profession or one that is not outright dismissive of patients who are trying to tell him his business — ask his opinion — press him on it — ask him to explain to the best of his medical knowledge, training and ability — just what he thinks the mechanism may be for BHP surgeries to induce an 8 times higher risk of death from pc. If he becomes defensive after that question, has no opinion, has no good answer, is dismissive because its only “one” study, or that its from “Europe” — he fails and I would drop this guy and move on. He’s not going to go out on any limbs and do any independent thinking. He’s going to wait for years for all kinds of confirmatory studies and the results are compiled and reviewed to death and new guidelines are issued by his AUA. On the other hand, if you get a half-way satisfying and intelligent sounding answer — press on! Ask him to explain the major differences between TURP and a biopsy. You might point out for him that both involve removing bits and pieces of possibly cancerous and non-cancerous tissue, bleeding and inflammation. Of course with TURP its on a much greater scale — but the biological changes that might provoke progression or metastasis take place at the microscopic level and may or may not be dependent upon a threshold — or — scale factor may just play a part in acceleration (i.e its 8X higher for TURP, but maybe 3X higher for biopsies) . So what I’m saying is “ask your doctor if a prostate biopsy is right for you” … but don’t be satisfied with just a yes or no answer. We’ll see how all this plays out in the years to come. What I have been saying for years — that many men may have been doing the right thing (RP) for the wrong reasons — may very well be validated. ( Having had their prostates removed not for what their might have done to them but for what their biopsies might have done to their cancer! ) What a complete and total shame that would be! A medical disaster story for the ages! A embarrassment for modern medicine right up there with thalidomide and hormone replacement therapy for women. I might add that AS is a relatively new phenomenon — introduced in response to all the pc over-treatment — a half-way measure — a ray of hope — seemingly a more humane and palatable alternative for many men. But with PC — the death rate is relatively low — and the lead times are relatively long — so it may be a decade or more before a study similar to the BPH/TURP study brings us the bad news.
Re: The study of prostate cancer in accident victims. I do admit to not be a statistician but I’ve reread parts and can’t figure out why it proves what my doctor said about most of the accident victim cancers being insignificant to be correct. —– “Of the 164 prostates biopsied, prostate cancer was detected in 47, of which, according to histologic criteria, 20 were felt to be clinically significant.” —- “The predicted probability of clinically significant prostate cancer increased almost threefold from age 60 to 70 years and then again from age 70 to 80 years.” —“The 164 prostate glands in our study were from male subjects with a median age of 64 years (interquartile range = 54 â€œ 73 years).” —“For example, only one of 65 (2%) of the men younger than 60 years had a clinically significant cancer, compared with 19 of 98 (19%) of the men aged 60 years and older.” —-“The predicted probability of clinically significant prostate cancer increased almost threefold from age 60 to 70 years and then again from age 70 to 80 years.” — So to sum up, doesn’t this study say that from 164 prostates taken from men with a median age of 64 years, 20 were clinically significant with the bulk of those clinically significant cancers occurring between 60 and 80 years and only one clinically significant case under 60 years? It’s just that I had planned to bring this report to my urologist but I just can’t seem to find anything damning regarding it’s findings of the commonality of clinically significant cancer for people in my age group. Am I wrong?
Is it true or not true that prostate cancer deaths have declined by 20% from 1991 to 2010? If true is it because of PSA screening and early detection or some unknown factors? If it is due to the screening, biopsy, treatment scenario is it simply a case of numbers: A huge amount of prostates removed translating to a smaller (but significant if it is YOU) number of survivors?
Jess, Yours is one way to look things it IF you want to believe the numbers. Reported causes of death are notoriously inaccurate. Its a bureaucratic form m.d.’s fill out. No penalty for making an errors. No one checking or looking over your shoulder. Rarely supported by autopsies. As I’ve stated before its just as likely that a metastatic pc death in someone who has had a rp might be recorded as bladder cancer or bone cancer. The number of people who’ve had rp has skyrocketed and the number of pc deaths is small — it wouldn’t take many such errors to effect the “lives saved” number. You also have to always “look at the source.” Statistics are often used/chosen to present someone’s biased point of view. Your first question should be why 1991? There was an extremely sharp increase in death from pc beginning in 1987 and peaking around 1992. So reductions of 20% are often touted from that time period. The touts uniformly fail to account for the necessary time lag between diagnosis, treatment and results for a disease like pc.. You don’t just introduce widespread PSA testing in the early 1990’s and death rates immediately begin to fall off. Maybe 10 years later. Not immediately. Look at the data yourself and chose 1986 or 1996 and you’ll see a less dramatic savings. In any event, your rationale is perfectly valid. One of the best pc studies has shown that 48 men have to be treated to save one life. Yes significant … if you are the one saved … but not very good from an intelligent risk/potential benefit standpoint. This is a big part of the problem with evaluating the risks involved in cancer … people allow emotions to trump rational thought. Most people just don’t have a clue about the statistical bases of modern medicine. I recently cited another very good 12 year study showing no difference between treatment and watchful waiting. NO DIFFERENCE. This is not insignificant! Statistically or otherwise. THIS IS HUGE! Anyone in their right mind would expect a big difference … would want to see a huge difference based upon all the treatment group has to suffer through. How about a 10 X improvement in survival? I’d even take 2X! BUT ITS ZERO! ZERO! And Murray is still researching and reading and looking for reassuring answers about his particular two cores of 30% G6 cancer … answers that he’ll never find. “What we have here is a failure to communicate.” What we have here is an abject failure of understanding of basic statistics not only by the general public but by most doctors. The number of pc deaths is relatively small, so from a statistical standpoint you need very large studies to make any meaningful inferences (let alone prove anything) about things like effectiveness of various treatments. (i.e. there will never be a study comparing treatment and WW in 52 y/o men who’s first biopsy showed < or > 2 cores with < or > then 30 % G6 …. or all the infinite variations we see in all the ambiguous biopsy findings) I might add that in 1996, when urologists began going hog wild with their scalpels, removing prostates with abandon, WITHOUT ANY PROOF, maybe based upon Murray’s philosophy: “Doesn’t it make sense to remove the cancer in this case before it spreads?” Dr. McCauley, who understood statistics, in the best pc article ever written, accurately predicted the results of that study which was released 15 years later: “The most conservative conclusion that can be reached is that an adequate prospective, randomised, controlled clinical trial involving treatment by radical prostatectomy is mandatory. It appears almost certain that this form of treatment will show no statistical benefit of increased survival.” (Note: now I think a really exciting avenue for some perceptive researcher (or medical writer?) to explore — might be take the landmark study I last posted and tie that with the spike in PC deaths in the late 80’s/early 90s. TURP surgeries were popular in the late 70’s/early 80’s. TRUS biopsies were not introduced until mid 1980’s. Whereas before TRUS biopsies BPH symptomatic men had TURP surgeries only to find out afterwards that they had cancer … now they would find out beforehand and possibly be redirected towards RP. So its even conceivable that pc deaths began their coincident decline not because of PSA testing but because of a reduction in TURP’s!) —————-OK…. enough for a while … this is Michaels blog …. not mine. Good luck to everyone.
Jess, there are apparently different ways of calculating mortality rates, but your question made me curious enough to check sources for some basic information. I did not go back to 1991 but only to 2001. According to the data I found, there were 30,200 deaths due to prostate cancer in 2001. In 2011 there was supposedly 33,720 deaths due to PC. This is an increase of about 11.5%. During that period the population grew about 9.1% according to Census statistics. This really surprised me, because with the treatment of increasing dramatically during those ten years, you would think the number of deaths would decrease fairly dramatically, if you believe those treatments are effective. On the face of it, these figures tend to support Ed’s argument that testing and treatment are not nearly as effective as represented by the medical establishment.
Murray I just remembered something else I had to pass on re: your doctor’s statements to you about autopsy findings. Sorry … again if it were me I’d find another doctor. I don’t really care for those who provide flip answers to a patient searching for truth. Someone’s already done the study: “Needle Biopsies on Autopsy Prostates: Sensitivity of Cancer Detection Based on True Prevalence” — http://jnci.oxfordjournals.org/content/99/19/1484.full.pdf — You might also spend a few minutes researching the reverse of your doctor’s claim i.e. cases where biopsy indicates cancer, the patient chooses rp, and then little or no residual pc is found during post rp prostate pathology (the “vanishing cancer” phenomenon). It happens.
EXTRA! EXTRA! READ ALL ABOUT IT! From a new study just out today. More evidence pointing to exactly what I’ve been saying for years about the risk of prostate surgeries and prostate biopsies: “We found that if the men underwent surgery for [BPH], the risk of prostate cancer death was increased nearly 8 times that of the general population.” READ ALL ABOUT IT HERE: ( http://www.medpagetoday.com/MeetingCoverage/ECCO-ESMO/28719 ) I REPEAT: DON’T MESS WITH YOUR PROSTATE. I wonder if the esteemed Dr. Walsh might have a public comment about this study. Somehow I doubt it. He’s too busy saving lives. OK. Yeah, right.
I’m grateful for your contributions Ed, because they present a very underrepresented side of the issue. I’m reading on the cancer forums about men opting for radical prostatectomies after their biopsy indicated something like a Gleason 5 or 6 in 1% of one core out of twelve. It’s sad. However, here is what I’m wrestling with: – I’m not among that 1% group. I have two cores both at 30%. I asked my doctor about the stats regarding 40% of my age group having prostate cancer and he claims most of those cases would be undetectable by biopsies and under 1%. I don’t know if that’s true. – Are you saying that treatment should never be undertaken? For example, what if someone had Gleason 7 in a significant percentage of several cores totally contained within the prostate? (Let’s assume they weren’t aware of your advice against biopsies in the first place.) Doesn’t it make sense to remove the cancer in this case before it spreads? – Almost every “watchful waiting” site I visit (and these are sites favorable to watchful waiting) indicate there is a higher death rate amongst watchful-waiters than with the surgery group over a 15 to 20 year period. I would think that risk would even be higher without follow-up biopsies and PSA tests. A big problem is that there is no data or studies supporting watchful waiting without testing so one must be totally dependent on extremely firm convictions to take that stand. – I share your distrust of biopsies. I don’t believe that there is a strong likelihood that this procedure will spread cancer via the blood stream but I question whether constant assaults on the prostate may weaken the organs ability to keep the cancer in check. On the other hand, low grade cancer sometimes progresses to higher grade and it seems the chances for survival must be greater if the cancer is dealt with before it escapes the capsule. (I guess this relates back to my second point asking whether treatment is ever appropriate.) Not a fun decision making process that I’m dealing with. 🙁
Murray. I follow this stuff pretty closely and I don’t know of any good 15 – 20 year studies. The most valid long term study I have found comparing treatment and watchful waiting is 12 years. It shows no difference in survival. And I submit that all of those watchful waiting controls have been contaminated by biopsies. So “no difference” could actually mean a HIGHER death rate for both groups than would occur in an unscreened, unbiopsied, untreated group (in other words — men just left alone). Of course studies are designed to minimize variables — the objective being a one to one comparison of prostate cancer survival only. So men who die on the operating table are out of the study, as are those who die from other complications of surgery or hospitalization or medication errors, or those who might contract antibiotic resistant staph infections, or even subsequent suicides due to post operative depression — all of which would make the treatment group statistics much worse. On the other hand, as we now know, many of those same factors could affect men receiving biopsies as part of watchful waiting. I have provided citations in previous posts for my views on biopsies. It is not just the possible seeding of pc cells into the bloodstream, its the violation of the prostate capsule, and its the INFLAMMATION biopsies cause. There is overwhelming evidence implicating inflammation as a factor in the development and progression of many cancers and specifically pc (see my earlier posts). I contend that no one really knows what biopsies may be doing to indolent prostate cancer. I will even concede that men choosing “cut it out” surgeries based upon them may be unknowingly “doing the right thing” for the wrong reason. Not for what their cancer might have done to them … but because of what their biopsy might have done to their cancer! And I challenge your doctor’s assertion about minimal autopsy findings with a quote from the very best pc medical reference article ever: “It should be emphasised that the cancers detected by this and subsequent postmortem studies were not confined to a few nests of isolated cells. Advanced stages of prostatic cancer were also found.” And whether or not they might be just a few isolated cells undetectable by biopsy — they are there — and they are subject to assault by biopsies and surgeries and the subsequent inflammatory processes that always result from those procedures. I contend that in the final analyses. the last study I just posted it will be a landmark … its likely to be determined that it was nflammation within the prostate caused by those BPH surgeries that accelerated otherwise dormant pc resulting in the 8 times higher death rate from pc. 8 TIMES! I further challenge your doctor’s assertions with the case of the 29 year old I previously cited. What does your doctor say about him? Oh .. just an outlier? Well … he has to say something. Maybe you missed my sarcasm in asking you to question Dr. Walsh about when is a cancer too small to ignore. Of course he has to say “never.” The implications of that are we should be out there finding and saving all the other 20 and 30 year olds just like that guy — they have to be out there. Ludicrous. Absurd to the n th degree. Just as the AUA’s lowering of the PSA screening guidelines to 40 instantly created millions of new pc patients — people like Dr. Walsh would have us create tens of millions more. Could be just what this economy needs. Obama might initiate a program to build dozens of new factories to produce the billions of PSA assay kits that will be needed. Ramp up biopsy gun production. Declare outright war. Tens of thousands of new urologists will be needed to lead the charge! Of course there will be casualties. There are in every war. Young men. Dead on the operating table, or from “complications” of biopsies or surgeries … many severely handicapped for life. Absurd enough for you. All of that just to possibly … (a big maybe) … (and only if all the (unproven) treatment (pick one any one) hype is true) … slightly reduce that 28,000 or so number of pc deaths annually (median age 80). GIVE ME A BREAK! So yes, I’m saying that pc should never be treated (except palliatively). I’m saying that my reading of all the available current research still concurs with Dr. McCauley findings in the best ever article on pc ever written : “there is no acceptable evidence that any current treatment of cancer of the prostate improves mortality.” I’m saying that your hypothetical man with the Gleason 7 biopsy findings would have been better off in the long run had he never allowed someone to repeatedly stick needles in it. You ask ” Doesn’t it make sense to remove the cancer in this case before it spreads?” My answer is unequivocally NO. Not when the diagnosis and removal process itself can contribute to spreading a cancer that left alone has little predilection for “spreading” on its own. Repeating over and over the number of men who die from prostate cancer each year is clearly a part of the scare tactics of all the fear-based Prostate Cancer “Awareness” campaigns. The implication always is that all 28,000 of these men could be be somehow saved if they were only made “aware” of prostate cancer early enough. The facts are that half of the these 28,000 are elderly who would never ethically be treated and eventually have to die of something. The facts are that many, if not most of those remaining have aggressive cancers for which no amount of early detection or treatment will ever help. That leaves very very few remaining to be “saved”