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My Story...
I was diagnosed with prostate cancer in the spring of 2003. I was 53 years old. As is the case with most men these days, my diagnosis came as the result of a PSA (Prostate Specific Antigen) blood test as part of my annual physical. My primary care doctor called me at home one night about a week after the blood draw and told me my PSA was high and that I ought to have the test done again as soon as possible to make sure the number -- 8 -- was accurate... » read more
96 Responses
ON July 26, 2010
John one more thing. One biopsy in a year seems like plenty. I have one every three years or so.
ON July 26, 2010
John something doesn't sound right to me. You said your first biopsy showed a Gleason 4. That would be almost unheard of. Where was this done? Most come back a 6 or higher. If you have another you may want to send the slides to a top expert like Dr. Epstein at Hopkins.
ON July 26, 2010
Larry it seems unlikely that your diet changes "cured" your cancer more likely, the repeat biopsy just didn't find any. If you are right, you have nothing to worry about. If I am right, you still have little to worry about, as your cancer would appear to be small and not aggressive. Still, I hope you are right.
ON July 24, 2010
was diagnosed in 1999 w/pc psa was 5 gleason score 4 then had a biopsy jan 2010 gl.score is 6 psa average 5.4 i am on ww since just enlarged prostate my uro. wants to do another biopsy in end of july next week what shoull i do biopsy or not ps i really love your website your gods gift to humanity love to all john q thanks
ON July 24, 2010
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ON July 22, 2010
My Prostate summary: In June 2008 at the age of 65, my PSA was elevated at 7.8. A Sept 2008 biopsy did show PC at 5% in two cores. Gleason was 3+3=6. I decided to go the herbal medicine route. I saw a Chinese Dr. who put me on a daily herbal tea, with unknown ingredients, mostly root based herbs and leaves. I take several supplements such as licopene, flax oil, omega-3’s etc. Also, over the counter prostate supplements such as Prostate Strength and Prostate Health. I exercise daily. No red meat, or dairy products such as cheese, milk etc. I had another biopsy in May of 2010 that came back negative. My Urologist insists they simply missed the cancer. I am convinced I am cured, however, I will have another PSA test in Sept., and another biopsy in 18 months.
ON July 12, 2010
Patrick no need for you to get treatment as i see it. But need to know your Gleason score and the size of your gland. Michael
ON July 11, 2010
Hello all, I am 51 years old. I have a PSA of 7.3, down from 9.3 3 months ago. I had a 16 core biopsy done and revealed PC in 1 core 25% involved. General concensus is removal but I am not certain that I am ready for that yet. All DRE's have come back negative. Had a bone and pelvic scan done, both negative.
ON July 10, 2010
Bill in Pittsburgh: until you have a positive biopsy you don't know you have cancer. It is possible your high PSA is due to the size of your gland. Find out the number of grams or ccs from the MRI. A large prostate can cause a PSA of 5 or even 8
ON July 03, 2010
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ON July 02, 2010
Mike Am 53 years old and am involved in my first PC analysis. Urinating blood got it all started (one episode) Told it was a UTI but had a PSA of 5.8. Uroligist said prostate was "Boggy" and went on antibiotics. 2 months later, "boggy" was gone, DRE was good, but PSA up to 7.1. Opted for another PSA in three months rather than biopsy. Pelvic MRI showed only enlarged prostate. I don't have a stream like when I was 30 but I can clear my bladder. It just takes a little longer now. For all I have read, WW is what I would prefer to do as the risk/reward of surgery/radiation doesn't seem worth it if I should get diagnosed with PC which apperas more and more likely. If the PSA is still high (or higher) in September, I will probably have the biopsy. Am I on the right track with this? So glad I found this blog. Real situations with real opinions and openness. Opinions on how to deal with PC varies. It does not seem to be that exact a science. Thanks
ON June 22, 2010
To Mike Lund Sorry to take so long to respond. The answer is yes. Michael
ON June 21, 2010
Abby if your husband's cancer is a Gleason 6 it is totally appropriate to watch and wait. Probably preferable tp treatment of any sort. Michael
ON June 21, 2010
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ON June 15, 2010
I am happy to see this site. My husband was diagnosed in February 2010 with a PSA of 7, and a gleason score of 7. He is 50 years old. He opted for the radical nerve sparing prostectomy. Due to my husbands past treatment for scoliosis, he had 3 steel rods in his back from when he was 15 years old. This created a flexibility issue, as well as an inverted pelvis, making it impossible for the Dr. to remove the prostate. They did remove lymph nodes that were clear of cancer, and downgraded his gleason to a 6. They were able to feel the prostate, noted that is was small in size, about 17 cc's, and the cancer had not breached. He went in for an ultrasound to map out a plan for seeding, and now they are saying the do not want to do it due to the small size of the prostate and the risk of pellets harming the urethra. The same issue arises with external beam radiation. It seems we have no other option but to watch and wait. Is the idea of this not spreading realistic? With diet and lifestyle changes, is this really something we can slow the growth of?
ON June 04, 2010
Hi , Your PSA may be high du to chronic prostate inflammation,check your blood test c reactive protein test on inflammation,I would start on reducing swelling and inflammation of your prostate and find root sources of inflammation in your body Peter Sadkhin L.Ac www.sunclinichealth.com www.acupuncturebuffalogrove.com
ON June 01, 2010
Jerry, thanks for sharing your story. I got a request from another reader who wants to know what supplements you take. Can you post here, or send me a private email? Thanks, Michael
ON May 29, 2010
Michael, thanks for telling your story.I was DX 7/04/1997 13 years ago. I have received no treatment todate. My B/psa was 5.7 now 5.4 with 5 or 6 pikes thru the years. Gleason 3+3=6. Like you I watch my diet, take supplements and exercise. I'm writing this to let men know it's possible to W/W for many years.
ON May 29, 2010
Michael, thanks for telling your story.I was DX 7/04/1997 13 years ago. I have received no treatment todate. My B/psa was 5.7 now 5.4 with 5 or 6 pikes thru the years. Gleason 3+3=6. Like you I watch my diet, take supplements and exercise. I'm writing this to let men know it's possible to W/W for many years.
ON May 18, 2010
I was diagnosed with PC on 05/03/10. Here are my stats - PSA 2.7, 3 of 12 cores positive two on left apex and one on right apex (Percent Tumor involvement - 1 at 5% and 2 at 10%), Gleason score 3+3, DRE negative, no sign of perineural invasion. Note that my PSA history is - 2008 - 1.9, 2009 - 2.1, 2010 - 2.7. I am 52 years old. Is watchful waiting a viable option?
ON May 08, 2010
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ON March 17, 2010
Chaim, Unfortunately, I don't know any docs in NY who can follow you on active surveillance. Mine is in Boston. But i can tell you that with a Gleason 7, you will have a hard time finding anyone to support you in this strategy.
ON February 22, 2010
I am 60 years old and have a biopsy with 18 cores, three of which were found to contain malignant cells - 2 with under 5%, and 1 with 8%. I have a Gleason 7 (4+3). I have decided to continue with 'active surveillance' rather than surgery or radiation and I am looking for a doctor in the New York City area that specializes in active surveillance.
ON February 09, 2010
Melanie, I don't know why anyone would urge immediate surgery in this case. Unless there is something I don't know, it borders on malpractice. As to finding a doc to oversee WW, I would look for a medical oncologist who specializes in prostate cancer. Unfortunately, I don't know any. But if you post up on the ww site of prostatepointers.org, you may find someone to help you.
ON February 06, 2010
Thanks for your site! My husband, Gary, 62 was diagnosed with PCa after a saturation biopsy on 12/30/09. Gleason score 3+3=6. Less than 5% with some PNI. PSA 8.4 and free PSA 11. Enlarged prostate. Both the local urologist and the urologist at Mayo are recommending surgery. We have drastically changed his diet with many of your recommendations and would like to follow active surveillance. First urologist urged immediate surgery. Scared my husband with fears about cancer going into bloodstream. Mayo doc says we can wait until June. Do you know a doc in the Twin Cities or Mayo who could work with us on active surveillance? Thanks for your help, Melanie
ON November 22, 2009
Michael, Thanks for your response. Although I didn't see Dr. Kantoff at D-F, I did see one of his colleagues. A disinclination toward active surveillance for younger men may be the general bias at D-F. Given your positive experience at Beth Israel, I think I will seek a consult there. Thanks again for your help. Best, Neil
ON November 22, 2009
Neil, To me, you seem a good candidate for watchful waiting. I am presuming you saw Phil Kantoff at D-F he is not all that amenable to WW. I suppose if you are going to be treated, seeds would be a good way to go, since your prostate is small. You might also look at cyberknife. But I wonder if you need treatment at all. You are not too young.
ON November 19, 2009
Michael, Thanks for creating this website. I'm 54 and after my PSA reached 4.2 from the high-twos over the past two years, I had a biopsy in August. The result: T1c, Gleason 3+3, two of of 12 cores positive on right side only, with 15% and 5% cancer in each core. I work in and live near Boston and have seen a medical oncologist, robotic surgeon and radiation oncologist at Dana Farber all were impressive and patient. The radiation oncologist ordered an endorectal MRI (3T) which showed no extracapsular extension or seminal vesicle involvement but did indicate some suspicious spots on the left side of the prostate. I subsequently had a volume study which qualified me for brachytherapy (I believe my prostate volume was 27cc). I've been thinking about active surveillance from the beginning but the doctors, while not dismissing it out of hand, have not been encouraging because of my age. I need to have a more detailed discussion about the MRI results -- I'm not sure if the evidence on the other side of the prostate where the biopsy originally revealed the cancer eliminates AS as an option. Any advice or questions I should ask would be greatly appreciated. Thank you in advance for any help (I apologize for the length of this post). Best regards, Neil
ON September 11, 2009
This is a very good website and very well done.
ON July 16, 2009
Jack, If the newly found cancer is also a tiny percentage of the sample and is still a Gleason 6, you probably are in good shape. It may have been there before but not found. Just as the cancer on the other side may still be there but just not found this time. The fact that cancer has been found on both sides may be a concern. Have you had an endorectal MRI? It might be able to show what is where better than these hit-or-miss biopsies. Remember, Gleason 6 = slow growing. So the fact that the new cancer is a 6 is good news.
ON July 14, 2009
Michael, You have been most helpful in the past and now once more I turn to you. In my previous posts I explained that they found cancer in 5% of 1 core of 45 (!) cores. A second lab reduced the Gleason from 7 to 6. Now a year later a second biopsy ( 16 cores) does not show the original cancer on the left side but a new tiny cancer ( Gleason 6) on the right.I meet with Dr. in 3 weeks to discuss options ( surgery, radiation, or continue PSA testing with another biopsy in a year. He told me not to panic but I am concerned. If it is still Gleason 6 but shows up in new place does that change parameters about dealing with Gleason 6? Thanks in advance.
ON June 20, 2009
Rick, if your digitals are smooth and they haven't found cancer yet, you are in pretty good shape. I wouldn't overdo the biopsies. I do one about every two years although I am already diagnosed. If you have to have one, some docs are doing them with 18 or more sticks ( under local anesthesia). If that doesn't find it, why worry?
ON June 20, 2009
Jack, A jump from 3.6 to 4.3 means nothing. PSA scores fluctuate wildly. Maybe you had sex a day or two before the test. Or went on a long bike ride. Either will do it. Or it could have been for no reason. In any case, unlikely your Gleason will change.
ON June 20, 2009
I know it sounds bad. One brother passed away from the cancer even though he had his prostate removed. The other brother seems to be doing well after removal. I am 55 and have been checking my PSA for 12 years. My PSA back then was 3.0. It has gradually increased to the 9.4 it is now. I had a biopsy two years ago when PSA hit 8. It was negative. My urologist wants to do biopsies over and over until he finds cancer...even if it takes 5 or 6 more biopsies. This sounds crazy to me. That can't be good for any body part. I had one urologist that wanted to remove my prostate 10 years ago at PSA 4.2. Digitals have always been smooth and soft, slightly enlarged. Very minor symptoms,ie. I don't wake up at night to urinate. Should I continue to watch and wait. Or should I become a human pin cushion. I am leaning towards doing one biopsy only.
ON June 19, 2009
In March you gave me some encouraging words when I told you my Gleason score was corrected to 6 by Epstein after originally being diagnosed by local lab as 7. My PSA went down also to 3.2 in another test. Now in preparation for another biopsy my new PSA is up to 4.3 Does that mean there is a good chance that my Gleason will go above 6? Thanks.
ON June 13, 2009
Yes, this is a concern. A similar study done by Dr. John Libertino of the Lahey Clinic also raised such concerns. I will attempt to post it.
ON June 11, 2009
An article ofpossible interest. Final outcomes of patients with low-risk prostate cancer suitable for active surveillance but treated surgically Mark Louie-Johnsun, Mischel Neill, Karien Treurnicht, Michael Jarmulowicz and Christopher Eden Department of Laparoscopic Urology, Royal Surrey County Hospital, Guildford, Surrey and The Hampshire Clinic, Basingstoke, Hampshire, UK Correspondence to Mark Louie-Johnsun, Department of Laparoscopic Urology, Royal Surrey County Hospital, Guildford, Surrey and The Hampshire Clinic, Basingstoke, Hampshire, UK. e-mail: mlj88a@hotmail.com Copyright © 2009 BJU International ABSTRACT To study the outcomes of a contemporary cohort of patients referred from around the UK with low-risk prostate cancer consistent with the UK National Institute for Health and Clinical Excellence guidelines for active surveillance but who were treated with laparoscopic radical prostatectomy (LRP) in a single surgeon series. PATIENTS AND METHODS From 1080 consecutive patients who underwent LRP between March 2000 and April 2008, 549 patients (51%) had low preoperative risk disease (PSA level <10 ng/mL, clinical stage ≤T2a and biopsy Gleason score ). The pathological outcomes of these 549 patients as well as a subgroup of 74 patients with preoperative prediction of 'insignificant' disease were assessed. RESULTS The mean age of the patients was 61 years, the mean (range) PSA level was 6.1 (1–9) ng/mL 38% of patients were staged as cT2a. In all, 126 patients (23%) were upgraded on final pathology to Gleason score . In all, 29 patients (5%) had extraprostatic extension with seminal vesicle invasion in five (0.9%). Of the 74 patients with preoperative prediction of insignificant disease, 61% had significant disease with 16% upgraded to an intermediate-risk group. Overall, there were positive margins in 44 patients (8.0%) and biochemical failure occurred in six patients (1.1%) with a median follow-up of 28 months. CONCLUSION In this contemporary UK cohort of patients with apparently low- or favourable-risk prostate cancer, 23% will have higher grade disease than preoperatively predicted. Even though active surveillance is increasingly being recommended for managing low-risk localized prostate cancer, patients and their physicians need to be aware of the potential for harbouring more significant disease.
ON May 10, 2009
David, Sounds like you are on the right path. Good luck.
ON April 29, 2009
After my PSA rose from 2.7 to 3.8 in one year, a biopsy in May 2008 revealed PCa in 5% of one core and 15% of a second. The other 10 cores were negative. Gleason score was 3+3, DRE was negative, so stage was T1c. I was 59. Two urologists, a radiologist, and a medical oncologist all seemed to be inclined to surgery. I finally found my was to Dr. Ian Thonpson at the Univ. of Texas Health Science Center in San Antonio who said what I wanted to hear. He said he has about 200 patients on Active Surveillance and only three have opted for treatment. He prescribed to cut out red meat and dairy products, PSA tests quartely, DRE every six months, and a biopsy in 2010. He is dismissive of supplements so I have stopped taking them. I also persuaded him to try me on finasteride (Proscar) which has driven my PSA down to 1.2 and just about dried up my ejaculate (not a problem for me or my wife). Now he doesn't want me to stop the finasteride. He and I agree that improved diet and exercise and active surveillance may actually improve my longevity and is certainly preferable to treatment. Stay tuned.
ON April 18, 2009
Hello Michael, Reviewed your referenced website .. Have to admit that I've found the term "Watchful Waiting" lacking in the need for more attention than just being watchful and waiting. Rather than just waiting, I see this reasonable option for prostate cancer patients rather requiring the active participation of both patient and physician in regular monitoring of diagnostics to then observe those diagnostics to determine at what point in progression of prostate cancer the move to medical treatment becomes necessary. Thus, Active Surveillance being more pointed and directing to both patient and physician. Though this is acknowledged by "prostatepointers," they still continue the "ww@prostatepointers.org" list as "ww." What you did when initially diagnosed in making it a point to not only do research and study, but to visit with physicians acknowledged to have at least some expertise regarding, particularly, prostate cancer, was important and I would expect those who visit your website will recognize that they, too, should pay similar attention. I appreciate that you took your prostate cancer, albeit minimal and fortunately remaining so to date, a step further and became an advocate to espouse your option choice for others with similar diagnostics to consider. My spur to action occurred when my cancer recurred three years following earlier RP followed by EBRT for an earlier Gleason Score 3+4=7. I initially delved into deep research and study of prostate cancer to insure my own20appropriate care. But as I learned more, others began asking my advice as to treatment regarding their diagnostics. This spurred me even further to research and study since I felt I could not feel comfortable providing recommendations to patients for their own further research and discussion with their physician(s) without being confident that I had assembled sufficient reference material to back my recommendations. I then began attending national conferences on prostate cancer to personally meet as well as to listen to the presentations by physicians acknowledged to be top in the nation with expertise in various areas of treating our cancer. And when the opportunity arose, I participated two years in a row as a "Consumer Reviewer" (patient representative) on Congressionally Directed Medical Research Programs regarding specifically Prostate Cancer Research on panels with about 19 research scientists to review research proposals submitted by other research scientists seeking funding for their research. This brought me into a world of science that is so important to we patients. The first year I was on a panel regarding Cell Biology. The second year on a panel regarding Physical Imaging (research in the use or improvement of imaging with, for example, MRI, CT, and CDU). To be in discussion with many of our top research scientists was so interesting and was the impetus to my even further personal research and study and now being able to at least better recognize medical20 jargon and application of science when reviewing the results of research and trials. And I became "obsessed." I just cannot back away from wanting to know more. And with more and more patients seeking my counsel, I found that it would ease my repetition of recommendations if I either authored, compiled, or posted papers from physicians that I could refer patients when asking for information regarding a particular area of prostate cancer. And this information is now available on our Wichita, Kansas Chapter, Us TOO Intl., Inc. website www.ustoowichita.org under the index word "Observations." I also have the subject "Active Surveillance" there. When patients access that webpage, they can just click on the subject wording and the information opens for review. I noticed you had remarked that you were considering Proscar (finasteride) to shrink the volume of your prostate gland. Did you ever begin that medication? Personally, I would recommend dutasteride/Avodart since it not only serves the same purpose, but has also been found to serve in gene regulation that brings about prostate cancer cell apoptosis as well as inhibit cell proliferation. You also remarked that with the use of Proscar, your PSA level should drop down. In the event you are not aware, though you probably are, despite your PSA level showing a decrease, your true PSA level while still having an intact prostate gland would, in reality, be closer t o twice that shown in the laboratory report. And finally, PC friend Michael, I am one of those people who seem to have an eye on typographical errors. So, must point out that in your report of visiting with physicians where you were at Logan airport and happened upon Dr. William Nelson, your remarked that you "introducted" yourself......trust you meant "introduced." (grin) Keep in touch, Chuck Disclaimer: Please recognize that I am not a Medical Doctor. I have been an avid student researching and studying prostate cancer as a survivor and continuing patient since 1992. The comments or recommendations I make are not intended to be the procedure for you to now follow rather, they are to be reviewed along with the comments or recommendations of others for your own further research, study, and discussion with the physician providing your prostate cancer care to come to your own, personal conclusion.
ON March 14, 2009
Jack, Your numbers suggest you have little to stress about. You are on the right path, as far as i can see. Just 1 of 45 (!) cores with a tiny bit of cancer, and a Gleason 6 (according to the top expert). That's a mere bag of shells!
ON March 13, 2009
Thank you for your comments.My Dr.sent me to Urologist ( from Hell) when PSA jumped from 3.0 to 3.9 The U did 45 (!) cores & 1 had less than 5% cancer. Gleason was 7. He wanted to know what I wanted to do about. Went to Urologist #2 who sent biopsy to Epstein who said Gleason was 6 not 7. Did another PSA which went down to 3.2. Having another PSA & Biopsy this summer. U#2 is a surgeon who is recommending AS until something is more definite. I think I am on the right track but the worry has been very stressful/
ON March 09, 2009
Jay, ordinarily, with the little bit of cancer found, I wouldn't worry too much. But the 3+4 is somewhat concerning. Did you have the samples checked by a second expert, such as Dr. Epstein at Johns Hopkins? Those gradings can be somewhat subjective, and he is considered the best. Your insurance should pay. Maybe you only have a 3+3. Can't hurt to check.
ON March 09, 2009
Tim, sounds like you are doing the right thing. Weird PSA jump to 43 though. That must have scared you. After mine jumped from 7 to 11, I went for an endorectal MRI and it showed the prostate volume had increased, but no noticeable increase in tumor size. You might have one of these - but make sure your insurance covers it. The hospital claimed it charges $7,000 for those without insurance, about $2,000 to my insurance company, of which I had to pay $991 because of my deductable.
ON March 09, 2009
I have been diagnosed with PC, at the age of 58. In 2 years time, my PSA jumped from 3.8 to 14.5. A month later, it had jumped again to 16.5. A byopsy was done and 1 of 12 cores returned a low volume (less than 5%) cancer. Gleason 3+4. My urologist, with 50 robotic procedures under his belt, said, "let's operate." I went to another urologist. He explained that the jump in PSA numbers could be a result of my having had a Urinary Tract Injection a few months before the latest PSAs were done. But, then again, he said, the jump could be the result of an aggressive cancer. We won't be sure unless the PG is removed. He said that, as we're dealing in "probabilities" and not "certainties," he could suggest that I either take a risk that it is an aggressive cancer and have surgery or I take a risk it is not, and WW. Most of the writers, on this blog, have Gleason 3+3 whereas mine is 3+4. What would all of you readers do, in this case - surgery or WW?
ON March 07, 2009
I was diagnosed with prostate cancer in 2003. I was ’young’ (47) and had a small amount of cancer. The biopsy found 2 cores with cancer (5% and 10%) . Both had a Gleason score of 6 (3+3). I decided on Active Surveillance of my cancer, even though my first urologist recommended a radical prostatectomy and a Radiation oncologist recommended seeds. I felt that with a cancer as small as mine, treatment was 'overkill'. I felt about as good as I have ever felt and I didn't want to mess it up with unpleasant treatment side effects such as impotence, urinary incontinence, penile shrinkage, etc. I was not willing to trade my high quality of life with some risk of death from prostate cancer for a lower quality of life with a lower risk of death from prostate cancer. The Klotz study (European Urology, Volume 47, issue 1, Jan. 2005 pages 16-21) has provided some scientific support for my decision. In this study less than 1% (2/299) of the patients died of prostate cancer in 8 years. I think, this study proves my position is pretty safe. An occasional psa test and exam is a small price to pay for a high quality of life. I consulted four doctors before I found one to assist me with Active Surveillance. I think that one reason that doctors so rarely recommend AS is fear of liability if things go bad. In today's legal and medical climate I really can't blame them. My surveillance consists of a psa test every 3-6 months, an annual DRE and an annual consultation. During the consultation, my urologist usually recommends treatment and talks about various methods. My psa usually ranges between 5-7. I had a scare last year when my psa jumped to 43. Also, my urologist found a hard spot during the DRE. A bone scan and biopsy showed no signs of worsening cancer. The ultrasound showed a spot on the prostate that appeared lighter than the rest of the prostate. My doctor said that it is probably a calcium deposit. Since this episode my psa has dropped to 6. I used to worry during the time between the psa blood draw and the results. This worry has diminished greatly. Now I probably worry no more than treated patients after their annual blood draw. Even if you are treated, you will be Watchful Waiting for the rest of your life.
ON February 10, 2009
Tony, PSA test scores fluctuate wildly on occasion. If you had sex within a couple of days of the test, that can cause it to spike, for example. Also, different labs can come up with different scores. Your other data seems ok. I'd have another PSA test and see if the number goes down. If not, it may be time for another biopsy.
ON February 02, 2009
Michael, I have been following active surveillance now for three years with PSA checks and biopsies. My PSA has fluctuated between 9 an 14 and in December it was 14 at a doctor's physical. I then took another one in January for a urology exam and it was 17. The January examination showed no palpaple tumor on the DRE. I also had only one positive core (Gleason 6) of 16 samples in a July, 2008 biopsy and also had an excellent MRI. Different labs did each of the two recent PSA tests. What is known about fluctuations between labs in results. I want to stay on active surveillance but the number and jump in one month have made me pause. Any thoughts. Thank you. Tony
ON January 18, 2009
Peter, Off the top of my head, I would say that 4 of 12 cores doesn't eliminate you from considering ww, particularly since no more than 15 percent of each are cancerous. I myself had 2 cores positive and have been on ww for 6 years. You might pose this question to Terry Herbert, his site is listed on the links section of my site. Good luck.
ON January 08, 2009
Michael, Great site. I am considering Active Surveillance to at least defer the negative effects of surgery or radiation. I was diagnosed in September, Gleason 6, 4 out of 12 cores positive, 15% or less of any core positive. Most doctors I talk to discourage me because of my age (46) and the number of positive cores. I'm not worried about the age argument but do you think the number of positive core eliminates Active Surveillance as an option for me?
ON January 02, 2009
Michael, Thanks for the website. I am in the same boat as many of us and am glad to see your website. I will investigate more fully but it is good to know others are out there with the same mindset. I read all the posts of surgery, brachytherapy etc and I really am not ready for those options although I don’t discourage others, I am not ready to go that route. Anyway, wanted to say hi and I will be an active participant! Best, Dan
ON December 22, 2008
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ON December 04, 2008
Pat, As to your question on biopsies, there is controversy over whether biopsies can spread prostate cancer. I don't believe there is a definitive answer to this. I myself have had 3. Last time, I also had an endorectal MRI (which is literally a pain in the ass) but may negate the need for as many biopsies in the future.
ON December 03, 2008
I had a comment put in May/08 – Went to my Dr. in Nov/08 and Psa no change , still 7.3, Dre. no problem, everything the same. I,m 72 years old. He wants me to get another biopsy of 12 cores – this would be my 2nd one. My 1st one had 1 core with 30% surface ? Only took 6 cores. I read from another person on the WW list and he seems to have done a lot of research on biopsies. I to feel like him in that poking 12 needles into a small organ through your rectum wall causing bleeding, is very invasive . The bleeding from it could also contains some C cells which can go out to where ever !! IF THERE IS NO “RED FLAG” to cause a biopsy is there a need for one other than the $$$ for the Medical system OR is this another way of finding out what is going on in there. Like the site . Always looking for infor to make a decision. Thanks for making it easier. I will try to foreward the other guys comments if I find them . Appreciate any comments. Ths Pat
ON August 15, 2008
Mr. Dankwa, Thanks for sharing your story. In my opinion, as long as your Gleason remains a 6, you can continue on watchful waiting. Eventually, those biopsies should be less frequent. Best of luck.
ON August 14, 2008
It was refreshing to read the various experiences on your site. Here is my story: Around 9/2005, my primary doc sent me off to an Urologist (U) after my psa jumped from 2.8 to 3.8. A biopsy revealed a GS 6 low grade PCa. Small amounts found less than 5% - something to that effect. My U immediately recommended surgery although he discussed the various options with me. None options 'tasted' good. I asked if I could watch and wait (WW) as I found that in the literature he gave me. He frowned on it saying I was too young for that (42 at the time). Being a resident of the Baltimore area, I wasn't going to have anything done to my prostrate without first going to Hopkins for a 2nd opinion. There, I found myself in the care of the head of U himself, a man that has procedures named after him. His verdict was going to be the gospel I said to myself. A review of the slides by Hopkins revealed almost the same findings as the original lab report. He did indicate however that I need not rush as it's very low grade at that point. However, he also strongly recommended surgery. He did not support my quest for WW citing the same point, namely that I was too young for that. I refused to yield to surgery or any form of treatment unless absolutely necessary. In the meantime, I did an MRI that revealed nothing significant. I also had my primary doctor send me off to do regular PSAs. In 10/07, with my psa now 5.7, I contacted Hopkins again for an opinion. My Hopkins U suggested that I had a repeat biopsy as it's been a while since my first. In my mind, this was going to be the tie breaker. If the GS numbers go North, I was going to treat.I went for it in 12/07. To my utter surprise, the biopsy came back negative!! Yes, negative! Yet, the doctor still recommended treatment -He did indicate that negative doesn't mean the cancer is gone, just that the needles did not pick it up this time (pure sampling he explained). He did indicate however that, if the cancer was aggressively developing, the chances of it coming back negative would have been very low. That sounded like common sense to me and hence was music to my ears. I reported this to my original U who told be the latest finding could be misleading. He therefore proposed a 3rd biopsy at which he will take more samples to settle this once and for all. I'd do anything not to have surgery, so I agreed. He took 22 (yes 22!) samples this time (He put me to sleep first of course!!). The results came back positive AGAIN! The only good news out of it is that it's still Gleason 6 and localized. In my mind, this looked like the same thing I was told in 2005! And like in 2005, he's proposing surgery or treatment as soon as possible. He thinks it's growing from the 2005 levels. So here I am today after this roller during which I have become somewhat of a biopsy veteran (I deserve a purple heart I am thinking) wondering what to do. Like you I have an enlarged prostrate and so I think my psa may be skewed also. I am taking supplements from Theralogix (prostrate 2.2 - has vitamin D 1600 IU, E 100 IU,Selenium 200 mcg, soy 125mg, Lycopene 30 mg plus gelatin,rice, flour, magnesium stearate, silicon dioxide), a Maryland based company and watching my diet, I also exercise regularly. Any thoughts? Thanks! RegardsKD
ON July 14, 2008
Ken, the fact that the urologist went medical school in Mexico probably makes no difference. He could have gone to Harvard Medical School and likely would have pushed you into surgery. Best, Michael.
ON July 13, 2008
On 7-5-06, after a biopsy I was diagnosed with PCa - Gleason 6 (3+3), 10% in 2 of 13 cores. My PSA had been 12.8. My uro (who had to take about 18 shots before he finally got the 13 cores, being frequently told by his assistant: "you should take number _ again") pressed me to undergo the robotic-assisted radical prostatectomy. I demurred and, instead opted for Active Objectified Surveillance. I researched and networked over the InterNet and devised my own diet. 13 months after my first biopsy I underwent a second and there was no cancer found, merely two vague spots which might, in time become adenocarcinogenic. I'm glad I chose the A.O.S. route, Oh, yes - that uro? I researched him, also and found that he had gone to medical school in Mexico. Isn't that like going to one in Granada? My age now - I'll turn 70 on 7-16-08. I've never felt better - I've lost 20 pounds of useless, unhealthy fat and hve more energy than I've had in over 20 years.
ON June 27, 2008
Nice Site! http://google.com
ON June 15, 2008
Paul, I have had 3 biopsies with no apparent ill effects (just the temporary discomfort and post-biopsy bleeding.) I don't know of any permanent side effects such as scar tissue, but cannot say definitively. I heard that repeated biopsies can make it difficult for a surgeon to perform a prostatectomy, but this seems like an area of some disagreement depending on whom you ask -- like so much in prostate cancer.
ON June 15, 2008
Michael, Thanks. Biopsies are no fun but I'll take it over the alternatives right now. By the way, are there any problems caused by repeat biopsies like scar tissue, etc? Paul
ON June 14, 2008
Paul, Congratulations on the drop in your PSA. That must have made you feel good. My doc says as long as my PSA stays pretty stable and repeat biopsies show the Gleason remains a 6, I am in good shape. Apparently, nobody dies from a Gleason 6 cancer. At some point, I may not need any more biopsies, he says. That would be a relief.
ON June 11, 2008
(See previous post on 2-28-08 for my story) Just had my check-up. PSA down to 3.3 from 4.9 previously. DRE showed nothing palpable. So I go again in six months for another PSA and annual biopsy. So far, so good. I also just found out that as a Viet-Nam vet I am eligible for disability benefits. I was there in 1968-69. According to the VA, I am presumed to have been exposed to Agent Orange. One of the conditions related to Agent Orange exposure is prostate cancer. I filed a claim last week. If you're a Viet-Nam vet with prostate cancer, FILE! Thanks to all who post here. It helps to hear your stories. Paul
ON June 11, 2008
Martin, that was smart of you. I'm sure all kinds of people were all over you to "do something" about it. Good luck in the future it seems you will be fine.
ON June 11, 2008
Diagnosed at age 49 in Oct. 2005. Gleason 3+3, 5% in 1/12 sticks. PSA was 2.1 but had increased over the last year from .7. Since then PSA back to .7 and checked every 3 months. Biopsy in October 2007 found no cancer only PIN. Am I glad I didn't have invasive treatment.....
ON May 23, 2008
Steve, All I can tell you is that my free PSA was 13 percent when first diagnosed five years ago, and that Dr. Walsh told me personally that watchful waiting (active surveillance) was "not out of the question" for me. Also, I was 53 when diagnosed. Five years ago WW might have been considered controversial for me. Not today. Not for you either, as far as I can see.
ON May 21, 2008
In Aug. '06 biopsies revealed 5% prostate cancer in 1 of 10 cores. The Gleason Grade was 3+3, and DRE yields T1c. I had biopsies repeated a year later with 0% of 12 of 12. Six months after that a prostate MRI was "clean," or did not show any problems. My questions are: (1) Dr. Walsh says in his book that, despite all of the above, if a man has a free PSA < 15%, he should move on to a definitive therapy. Many others say the free PSA is irrelevant once you have been diagnosed. (2) I am now 60 years old, and many say that someone that young should never choose AS. Can you help me with these "controversies"?
ON May 09, 2008
Pat, At your age, with your numbers, I see no reason for treatment. Hope your urologist agrees. If not, find a medical oncologist who specializes in PC if you can.
ON May 07, 2008
Hi Micheal. Thanks for a great web site. I am going on 72, in good health except for being diagnosed with PC in 2006. Gleason of 3+3, PSA 5.2, T1C tumor. The urologist recommeded surgery or rad. seeds. I chose AS. My lastest PSA is 7.3 Mar.2008 still feel that AS is good for now. Seeing my urologist tomorrow to see what he thinks. Thanks to all who input their stories as it gives me confidence on my decision so far. Appreciate any back feed. Pat
ON May 06, 2008
Fred, I have signed the petition and urge other visitors to this site to do the same. No reason why men should not lobby for funds the way women have done so successfully.
ON May 06, 2008
HI Michael and All, Hope things are going well. I am writing to pass along the web site for the "Prostate Cancer Petition". Please take a look and if you agree sign up. We need all the help we can get.http://www.prostatecancerpetition.org. Thanks all, Take Care. Fred
ON April 24, 2008
Anthony, with the numbers you described, it would seem that watchful waiting is the right choice for you. As for your somewhat high PSA, that may be due to the size of your prostate itself -- you said they were going to try to shrink it before undergoing seed implants. You may find in time that you only need a biopsy every couple of years and PSA tests maybe twice a year. That makes it easier. Good Luck.
ON April 22, 2008
Michael, I was diagnosed in March, 2006. MY PSA was 12, Gleason 6, T1C, and one of twelve cores showed less than 5% involvement. I decided on brachytherapy and was given a three month shot of Lupron to shrink my prostate prior to the seed implant (my story is similar to a previous writer). The Lupron shot was so invasive to my physical and mental health that I began to research active surveillance intensely and I decided that I would follow an AS protocol of yearly biopsies and four PSA tests each year. I had a second biopsy in March, 2007 and no cancer was found but my PSA remains high at 12.8. I am scheduled for a third biopsy in the summer. I am confident that I have chosen a treatment that is working for me and I would appreciate any comment on my post. I wanted to add my story to your superb website. Anthony
ON April 05, 2008
ON OR ABOUT MARCH 17TH, 2003 I WAS DIAGNOSED WITH PROSTATE CANCER. THIS WAS DONE BY MEANS OF A BIOPSY. THE BIOPSY READ – A. PROSTATE, RIGHT, CORE BIOPSIES: BENIGN PROSTATE TISSUE WITH FOCAL GLANDULAR ATROPHY. B. PROSTATE LEFT, CORE BIOPSIES: ADENOCARCINOMA, GLEASON SCORE 3+3, STAGE T2a, PERCENT ORGAN CONFINED=81%, INVOLVING A SINGLE SMALL FOCUS IN ONE CORE, LESS THAN 5% OF BIOPSY TISSUE. 8 CORES WERE TAKEN – 4 FROM RIGHT SIDE, 4 FROM LEFT SIDE. AT THE TIME MY PSA WAS 1.5. THIS ALL CAME ABOUT BY MY PRIMARY DOCTOR THINKING HE FELT A SMALL LUMP ON THE RIGHT SIDE OF THE PROSTATE AND SUGGESTED I SEE A UROLOIGEST THAT HE RECOMMENDED. THE UROLOGIST, WHILE GIVING ME ONE OF THE QUICKEST RECTAL EXAMS I HAVE EVER HAD, CONFIRMED THE PRIMARY DOCTOR’S FINDING AND SUGGESTED A BIOPSY. UPON GETTING A SECOND OPINION FROM A RADIATION DOCTOR, AND HE GIVING ME A DIGITAL RECTAL EXAM, I WAS TOLD MY PROSTATE FELT NORMAL FOR A MAN MY AGE. THIS MADE ME A LITTLE CONFUSED AND SKEPTICAL. UPON FURTHER RESEARCH AND STUDY I DECIDED ON “WATCHFUL WAITING” AS A FORM OF TREATMENT TILL MORE RADICAL TREATMENT IS NECESSARY. MY LAST PSA READ 5.0 WITH A FREE PSA OF 9.2%. ALL OF THE DIGITAL RECTAL EXAMS, OF WHICH I AM HAVING 2 TO 3 A YEAR, ARE NOT SHOWING HUGE ABNORMALITY (NO LUMPS FELT). I AM TAKING A VARITEY OF VITAMINS AND SUPPLEMENTS i.e.: WOBENZYM, VITAMIN E & D, SELENIUM, OMEGA-3 FISH OIL,IP-6 & INOSITOL, NEXRUTINE, GARLIC OIL. I QUIT SMOKING, MAINTAIN MY WEIGHT, EXERCISE DAILY, EATING LOTS OF FRUITS AND VEGITABLES. GREAT WEBSITE. MUCH NEEDED FOR SUPPORT WE ALL NEED TO FIGHT THE GOOD FIGHT!
ON March 21, 2008
1998, PSA = 4.2 Biopsy shows 5% of 3+3 Gleason. Talked to my Urologyst, U of Calif SFO, Stanford University and consulted many WW Sites all of which lead me to WW. After ten years of weight loss, regular exercise, a diet of mostly vegitables plus suplements, I am now at my BMI weight, my PSA had progressed up to 7 and is now back to 5.0 and at the age of 70 I am in the best shape of my life. The best advise that I can offer anyone is "Slow down, think and tell your doc that you will let him know what is to be".
ON March 04, 2008
Jim, At your age, I wouldn't worry about treatment. If you are worried, find a medical oncologist who specializes in prostate cancer to follow you, if possible. The concern about breaking bones, I presume, has to do with not eating dairy? Well, just stay away from low-fat dairy products. The whole milk products may be ok. Best of luck to you.
ON March 01, 2008
Hi, Michael! Yours is the only website and source which I trust for accurate information. Thank you! I am 83 years old, weigh 165# and in great health. In June I had a DRE and subsequent biopsy. My PSA was 7.3 and my Gleason was 3+4. Immediately my urologist told me to speak with his radiaiton oncologist partner and decide whether brachytherapy of IMRT was best treatment for me. I graciously declined either and am now on watchful waiting. I take all of the supplements you recommend and exercise on the treadmill for 45 minutes per day. I also go into my infrared sauna every day. I just went back to my urologist this past week, who now is trying to scare me into some kind of treatment, telling me that I will fall down and break many bones! What is your opinion, Michael? Thank you again.
ON February 29, 2008
Paul, Glad you found the site and hope it is helpful to you. Your numbers suggest watchful waiting will be a safe strategy for you. You should be good for years -- maybe you'll never need treatment. Good luck and keep me posted.
ON February 28, 2008
Michael, Found your site through the USToo website. I was diagnosed last October. PSA 4.9, Gleeson 6, T1C, one of twelve cores showed 5% involvment. I had decided on brachytherapy for treatment and on the advice of the radiation oncologist and was given a three month shot of Lupron to shrink my prostate prior to the seed implant. I had an ultrasound on February 19th. The results were favorable and the implant was scheduled for March 17th. I had been reading a lot about treatment options and attending a local support for gay men. I was beginning to have doubts about the risks and side effects of any treatment and reading more about watchful waiting. Faced with an actual appointment, I began to realize that I wasn't ready for it. I called the urologist and canceled the implant and told him that I wanted to do watchful waiting. He said that he was OK with that considering my numbers and staging, so that is what I'm going to do. I think that I can deal with it psychologically. I think that that is the most difficult part for most people. Anyway, I'm glad I found your site. I think it will help me with my treatment plan. Regards, Paul
ON February 25, 2008
good morning, just read your story i found in ustoo. it has been almost a year since i was diagnosed with pc, Gleason's 6, PSA 3.97, TNM classification T2a. Last PSA test was 7/07 showing a value 0f 4.8. I haven't stopped learning about the subject 1 day. e.g.. last week an support group meeting at city of hope (which happened to be 15' minutes away from home) with a very dramatic (video) presentation of a daVinci procedure by Dr. Lau. Last week a friend and past pc patient (at Loma Linda) gave me the book: You can beat PC and you don't need surgery to do it. isbn: 978-0-6151-4022-3. I haven't run across a more precise description of our subject (procedure and results). http://protonbob.com/proton-treatment-homepage.asp also: just came across this article: http://www.ustoo.org/article.asp?SMContentIndex=3&SMContentSet=0 and 1 source: http://www.drred.com.au/new/ regards Hans Jutte
ON February 21, 2008
Hi Michael, An article which may be of interest to your site. Best wishes, David ------------------------------------------------------------------------------------------------------------------------------------------- Urologe A. 2008 Feb 15 [Epub ahead of print] [Active surveillance for prostate cancer.] [Article in German] Graefen M, Ahyai S, Heuer R, Salomon G, Schlomm T, Isbarn H, Budäus L, Heinzer H, Huland H. Martini-Klinik, Prostatazentrum an der Universitätsklinik Hamburg-Eppendorf, Martinistraße 52, 20246, Hamburg, Deutschland, graefen@uke.uni-hamburg.de. Active surveillance is a valuable treatment option in patients with newly diagnosed low-risk prostate cancer. Studies considering a watchful waiting approach showed favourable cancer-specific survival rates in such patients and it is assumed that patients benefit from a definitive therapy if life expectancy exceeds 10-15 years. Therefore active surveillance is especially valuable in older men and in patients with an elevated comorbidity profile.Precise identification of histologically and clinically insignificant prostate cancers is still not possible today. Active surveillance includes regular PSA measurements combined with follow-up biopsies however, no standardized protocol exists so far. Histological progression in the follow-up biopsy and PSA elevation are the most important criteria for initiating definitive therapy.Today only a minority of low-risk patients join an active surveillance protocol and a substantial proportion of these men leave such a protocol early without evidence of progression. The psychological burden of living with an untreated cancer seems to be responsible for this. Active surveillance has the potential to lead to undertreatment as there is some evidence that prolonged treatment delay might adversely affect outcome of definitive therapy. PMID: 18273597 [PubMed - as supplied by publisher]
ON February 17, 2008
Hi, So glad to finally find another tomato fisted man who takes the paste straight, or nearly so, from the can! If I have time, I shake some Tobasco in, but either way, it's just great! Probably should drip some olive oil in while I am at it, tho I now imbibe mostly salmon oil, after reading a study that indicated salmon oil twice as effective as other fish oil at fighting Mr. P.C. I take all the supps you recommend, and plenty more. Let us pray! All the best, Terry Savery age 64, psa 4.0. and now taking dutasteride, metformin (anti-inflamation), and avastatin, plus enuff turmeric powder to supply an Indian restaurant and all the chocolate powder Hershy sends this far south!
ON February 16, 2008
Appreciate your site, I was diagnosed in Dec. 2004. Gleason was 6 plus other waT1c No MoMy psa continues to rise but at 78 alnmost 79 I keep choosing watchful management. Last bone scan in Dec was clearKeep up the good work
ON February 16, 2008
Oh my God Carleton, I am so happy and relieved for you!!!! At the time you first wrote I thought that things were hopeless. While it is true that we cannot prove Orlistat had any positive effect, I am glad that you had the courage to think outside of the box and try it. I wish you all the best with the rest of your new life!! We will continue to work arduously for the sake of others that have cancer, and we have some amazing new breakthroughs since I last spoke with you. We will keep you in mind as a success story. Jeffrey W. Smith, Ph.D. Professor Director Center on Proteolytic Pathways Director Program of Excellence in Nano-medicine The Burnham Institute for Medical Research 10901 North Torrey Pines Road La Jolla, CA 92037 858-646-3121 jsmith@burnham.org -------------------------------------------------------------------------------- From: Carleton Gates [mailto:c.gates@islandtelecom.com] Sent: Friday, November 16, 2007 10:02 AM To: c i gates Jeff Smith Subject: Update on Fatty acid synthase experiment PCa Thank you for your work with Orlistat. While the exact mechanism of how Orlistat has worked for me seems somewhat different,i.e. , little may actually have reached the cancer site, the apparent results have left me both stunned and grateful. In conjunction with an ULTRA low fat,mainly vegetarian diet, the psa reading has regressed to where it was 5 years ago. This was after 1 year of regimen. I fully realize that"1swallow does not make a Spring",but my Doctor's words , "You do not have prostate cancer. What you now have is typical of normal prostate cells.", those words are grounds for great relief. (I should explain that I refused external beam radiation, because my Gleason at time of RP was 7. Also I refused traditional hormonal ablation therapy after failed RP on the basis of side effects and inconclusive data on longevity) In short, while 1 swallow does not make a Spring, one cure that gives the wings of freedom to one swallow is simply marvellous.! Thank you again for your research. Carleton Gates, Charlottetown, P.E.I. ,Canada [This is a follow up to my earlier comment. Had I gone earlier for RP, I probably would have been cured by surgery]
ON February 07, 2008
Hi Michael - Nice site. I was diagnosed at age 49 in 2002 with a Gleason of 6 and PSA of 7. This July will mark my 6th anniversay of AS (or WW), and my last PSA in November was 0.4. Shortly after my diagnosis I had to go take care of my Dad whom was in the latter stages of the disease. He died four months later. I found a new urologist when I got back home(first one was adament on RP) and have been with him since. No biopsies since then since my PSA very rarely goes above 2. I take prostasol, Zyflamend, Vit D3, Citrus Pectin and Ellagic Insurance Formula. They seem to be doing the job. I pretty much eat what I want, but not much red meat and lots of pomegranate and bluberry juice. I saw first-hand what an RP and radiation did to my Dad and the subsequent life style it led to and of course it still recurred and it wasn't a pleasant way to go, believe me. I, as does Terry Herbert, believe that PCa is systmeic from the get-go, so any of the tradional treatments are only a stop-gap measure. They may debuld the tumor but they don't get rid of those other cells that are floating around waiting for some place to imbed themselves, usually the bones. Keep up the good work. I will visit often.
ON February 01, 2008
Nice looking site, Michael - and some good basic stuff there. I set up my own WW site at http://www.prostatecancerwatchfulwaiting.co.za some time back, but it's a mess and needs some more work on it. There are some good pieces posted there, although some links need attention. Have you seen this bit on Active Surveillance http://tinyurl.com/223wgh which is a pretty good summary of the option? Well worth a read. I think. I see in the one piece you authored that you say: ``The disease took the lives of about 30,000 men last year alone in the U.S. , although the death rate has dropped by 25 percent over the last decade.'' and, quoting Glenn Bubley MD, For example, he said it is not known whether the declining death rate is due to the advent of PSA testing or the introduction of hormonal therapy for patients with late-stage disease. I've had problems with these commonly stated issues, which apply specifically to the US: 1. the death rate, measured in deaths per 100,000 men climbed for many years and the oft quoted reduction is from when it hit it's peak in about 1993, but it still took a number of years to get to the same level as it had been 30 years earlier in the 70's. Why did it climb? The increase is commonly said to be mainly attributable to changes in how cause of death was assigned on death certificates. So, if that was the case, then surely such a change could also lead to a reduction in death rates - and there were many changes in systems over this period. as a matter of interest there is a very similar pattern here in Australia leading me to wonder if there was an international change in protocols. 2. although one theory is that ADT (Androgen Deprivation Therapy) is partially responsible for this reduction, the fact remains that the median age for death from prostate cancer has not changed significantly - it is still 82 or 83 years old with about 95% of deaths occurring in men over 75, so this seems a little unlikely. 3. Since prostate cancer death is so closely associated with ageing, if there is a substantial change in the mix of the ages of men in the US population, this will affect the death rate, since, if younger men form a greater part of the population, the number of men at risk from prostate cancer death will be an ever smaller proportion. I can't access all the data to demonstrate this and in any event I do not have the statistical expertise to do so, but I'll bet London to a brick that there is a greater proportion of males under 75 in the US population now than there were ten or fifteen years ago. If this is so, then obviously the death rate would reduce. Good luck with your site. All the best Terry Herbert I have no medical qualifications but I was diagnosed in '96: and have learned a bit since then. My sites are at www.yananow.net and www.prostatecancerwatchfulwaiting.co.za
ON January 31, 2008
Hi Michael, I also have saddled up with the mistress of PC, one that none of us would have selected, and all of us probably hope can be bought off. She taunts us with Gleasion scores, and psa numbers, research articles, etc. We hope she will drift away like a forgotten high school summer love, not the serious kind of attraction that you want to die with and not because of. Active surveillance is a hell of a name for an unwanted love affair that is never far from one's horizon. My affair has been going on for almost three years, with two biopsies, regular psa's, diet considerations, article research, etc. You have developed an excellent web site. I would like to to encourage you to include some kind of reference information, foot notes etc. for the articles that led you to listing the ingredients in vitamins & supplements to take and foods to eat. There seems to be a moving target of research data that is constantly changing with each trail study addressing this issue. The Media section sets the standard with the kind of background that makes the Supplements section needs the same kind of useful research data. I would like to think that thru food and supplements and life style, one could develop an internal environment that can cool the ardor almost like a preventative maintenance program. That's the reason that eating a corsage of broccoli almost daily seems like a good idea. Thanks for helping to spread such vital messages in your web site. Art Benson
ON January 31, 2008
The following does not prove me right, but I consider this info both useful and encouraging. NOVEMBER 14 years ago: At age 56 I undergo RP at the Royal Victoria in Montreal, Canada. With the nerve sparing operation, I am both potent and continent by March. PSA was 9.6 and Gleason 7 with 2 of 10 biopsies positive. Subsequent to RP, I experience a slow but steady psa. I consider options of radiation and hormonal ablation .MAD(Maximum androgen destructionl) over 5 or 6 years would be curative but at terrible cost with male menopause and bone destruction etc. I am intrigued with research on fatty acid synthase re breast cancer. I decide to go on a very low fat diet with all the possible "goodies" such as seleniumvit D peanut butter{resveratrol) and so on. In October of 2006, psa has reached 3.43 and recommended treatment was Casodex 150. After 14 years I have learnt much trivia. Casodex is sort of the last"toboggan ride". The work of Dr. Smith at La Jolla Calif. leads me to experiment with Orlistat. While little if any Orlistat will get to the cancer, my hope is to remove enough animal fat from my digestive system to stabilize the psa. Both Dec. and January tests are indeed stable. I go the extra mile with a total vegetarian diet along with Orlistat. By June 2007, psa has DECLINED to 2.4 !!! I continue my regimen but add a small amount of lean steak to the home made vegetable soup that is the mainstay of my nutrition. By October 2007 psa declines to 2.2 !! I have lost 35 lbs. and am at an ideal weight. Theoretically psa should have increased with weight loss. My testosterone level is in the normal range at 19. Now we know from Old Testament writings that animal fat was forbidden. More recently, Johns Hopkins University and FASgen are working with other fatty acid synthase inhibitors that with either patch or pill seem to cure a number of cancers with no known harmful effects. Bottom line: the good thing about prostate cancer is that it is slow growing and psa is a good measuring tool of what is happening with the cancer. We, as men, thus have the useful tool of psa velocity. Insofar as I can determine, a NEGATIVE VELOCITY is cause for hope. Cheers, Carleton Gates, Charlottetown, PE, Canada.
ON January 30, 2008
Robert, I may have to rethink the recommendation against calcium based on a new study, published in December, which found that the amount of calcium in the diet appears to have little or no impact on the risk of prostate cancer. The study, which I intend to post on my site, noted that ``dietary calcium and dairy products have been thought to increase the risk of prostate cancer by affecting Vitamin D metabolism. Data from several prospective studies have supported an association, but many other studies have failed to establish a link.'' The new study, from the University of Hawaii, found no evidence that calcium or vitamin D from any source increased the risk of prostate cancer. The study also found no association between dairy products and prostate cancer. However, the study did find that low-fat or nonfat milk did increase the risk. A second study, by the NIH, reported similar conclusions, saying skim milk was linked with advanced prostate cancer. So maybe calcium supplements are ok after all. But probably best to avoid skim milk or other low or nonfat dairy products.
ON January 30, 2008
Michael: Great website and much needed. I am a Gleason Six as well. Diagnosed a year ago and have had the good fortune to find two urologists who support ww. My question has to do with the diet suggestions. Why avoid calcium supplements? I have read a great deal of lit about PC and diet, but that is the first time I have seen anything about calcium not being recommended. If you cut it out, what do you do for bone strength? Thanks, Robert McCarl.
ON January 30, 2008
Dear Michael, Congratulation with your new website. I will be following it. One day I hope that I can open a web site like yours in Iceland. Men in Iceland are very ignorant about PC and doctors are not very informative. I was diagnosed with PC in February, 2005 with PSA 10 and Gleason 6 (3+3) and against doctors' advice selected active surveillance. I have been taking supplements from Icelandic medicinal herbs and changed diet like you describe on your web site. I have been reading a lot about PC during the last few years which I would have liked to have known earlier. Best of luck with your new web site. With best regards, Thrainn Thorvaldsson Saga Medica Reykjavik, Iceland www.sagamedica.com www.sagamedica.is thrainn@sagamedica.is
ON January 30, 2008
Bill, It seems to me that your numbers suggest you are a good candidate for watchful waiting. I would be curious to know how your meeting with your urologist went. Good luck, Michael Lasalandra
ON January 30, 2008
Hi, My name is Bill and I have been diagnosed with prostate cancer. Tomorrow, I have my first meeting with the urologist who did my biopsy but here is what I know so far. I had a 5.1 PSA with no enlargement found during DRE. My urologist recommended biopsy and I agreed. The results were 3+3, 1 of 12 at 30%. Tc1. I am 53 and a lot of what I am reading says that is too young for active surveillance although I have seen a few sites such as Michael's (great web site by the way, Michael). Any advice would be helpful as I make this decision. Thanks and God Bless. Bill Arnott
ON January 30, 2008
Bill, Your numbers indicate you are a good candidate for watchful waiting (or active surveillance as some are now calling it). Hopefully, you will never need treatment. Keep monitoring it closely. Perhaps, if the day comes when you do need treatment, there will be a more benign approach available. Best, Michael Lasalandra
ON January 29, 2008
Michael, thanks for telling your story. Choosing not to be "treated" is swimming upstream against most advice. I am also a Gleason 6, psa 7 man. DX in July 05 with a psa of 4.6. I'm 56 so I don't think I can ww forever, but am grateful for this period of grace and hope that some of the new cancer research can intervene and slow the growth of my PC without side effects.
ON January 18, 2008
Dear Michael. I read everything on your website with keen interest. The site is an impressive accomplishment. It is very easy to use, and the writing displays the quality that has been your great strength throughout your working life: the ability to explain complex medical questions to everyday people in simple, clear and direct language. In your hands, journalism is a helping profession similar to teaching or medicine. I hope you feel the satisfactions teachers, doctors and nurses must feel as they dedicate their lives to helping other people. I will recommend your site to others. Thank you for creating it. Naturally, I am hoping you are watching and waiting for a day that will never come. With warm regards, Tom
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