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ON February 04, 2012

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

ON February 03, 2012

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.

ON February 02, 2012

Jim, I get a PSA every 6 months

ON February 02, 2012

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.

ON February 01, 2012

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?

ON January 27, 2012

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.

ON January 26, 2012

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.

ON January 25, 2012

Hey Paul, My PSA moved from .7 to 1.3 biopsy revealed Cancer Gleason 6, no PSA no idea I Had Cancer

ON January 10, 2012

Has anyone found a good integrative/alternative doctor to work with while on AS?

ON January 05, 2012

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.

ON December 16, 2011

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!

ON December 09, 2011

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

ON December 08, 2011

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.

ON December 07, 2011

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.

ON December 07, 2011

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.

ON December 05, 2011

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).  

ON December 02, 2011

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.

ON November 25, 2011

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.

ON November 24, 2011

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&#146t help his case). Be objective, not desperate, and do your own research rather than solely relying on someone else&#146s (otherwise you could be subject to that person&#146s agenda (or vendetta) which doesn&#146t 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&#146s office (informed choices works better if you are knowledgeable going in!). Question that which doesn&#146t sound right & get a second opinion if necessary.

ON November 23, 2011

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.

ON November 21, 2011

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

ON November 21, 2011

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.” 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” 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.

ON November 21, 2011

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]

ON November 21, 2011

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.

ON November 20, 2011

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.

ON November 19, 2011

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.

ON November 19, 2011

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.

ON November 18, 2011

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.

ON November 18, 2011

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,” 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.”/// 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."

ON November 18, 2011

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.

ON November 18, 2011

OK Tony ... by my count that's 3 Australian Health advisory groups for me -- and 1 for you. So I guess you win ...

ON November 17, 2011

@ 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.

ON November 17, 2011

Thanks Michael for taking care of the imposter issue.

ON November 17, 2011

Thank you Michael for your follow through.

ON November 17, 2011

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.

ON November 16, 2011

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.

ON November 16, 2011

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.

ON November 16, 2011

@ Tony M. Thank you for the confirmation.

ON November 16, 2011

Murray and Alan: i will look into the matter of the fake postings to the best if my ability.

ON November 16, 2011

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 ///

ON November 15, 2011

If you google 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”. Click on that and scroll down to “Conclusion”. 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”?

ON November 15, 2011

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

ON November 15, 2011

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.”//// 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.

ON November 14, 2011

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).

ON November 14, 2011

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.

ON November 14, 2011

(The 2nd of 3 back-to-back related postings). Re: The USPSTF Recommendations and the No Test/ No Treatment Philosophy – 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” 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” 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”. 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” because “...the length of time required to experience a mortality benefit is greater than 10 years.” 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 – 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 – the USPSTF having a much more practical view.

ON November 13, 2011

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.

ON November 12, 2011

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?

ON November 11, 2011

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.

ON November 11, 2011

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.

ON November 10, 2011

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.

ON November 10, 2011

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.

ON November 10, 2011

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.

ON November 10, 2011

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.

ON November 10, 2011

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.

ON November 09, 2011

@ 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”, but, of course, it didn’t. It is commonly recognized, (including on this website under the heading: “Vitamins, Supplements to Take, Foods to Avoid”), 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”, 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” and “push the envelope”. 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.

ON November 09, 2011

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.

ON November 09, 2011

@ 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” (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” (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”). 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 – 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”, 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.

ON November 08, 2011

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.

ON November 08, 2011

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.

ON November 08, 2011

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.

ON November 08, 2011

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.

ON November 07, 2011

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.

ON November 06, 2011

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.

ON November 05, 2011

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.

ON November 04, 2011

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” there is an inflammatory response of the body to “heal” 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” a surgical nightmare. We speak of not having a tissue plane as scarred, adherent, or “dissecting through concrete.” 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…back to the question ….’Why do I have to wait 6 wks to 3 months to have my prostate out?” 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” 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….this has not happened to me….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.

ON November 04, 2011

@ 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” 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!

ON November 04, 2011

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 — 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.

ON November 03, 2011

@ 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.

ON November 03, 2011

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.

ON November 03, 2011

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

ON November 03, 2011

@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.

ON November 03, 2011

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).

ON November 03, 2011

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,” 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.” 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).

ON November 03, 2011

Whoaaaaa! Sounds like Alan's gone over the deep end. talk about a rambling man. Brain metastasis anyone?

ON November 03, 2011

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.

ON November 03, 2011

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.

ON November 03, 2011

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.

ON November 03, 2011

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?

ON November 03, 2011

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

ON November 03, 2011

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.

ON November 02, 2011

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.

ON November 02, 2011

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!

ON November 02, 2011

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).

ON November 02, 2011

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.

ON November 01, 2011

@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.

ON November 01, 2011

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.

ON November 01, 2011

@ 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.” 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.

ON November 01, 2011

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?

ON October 31, 2011

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” 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” and it starts off as “@ Captain Joe...”. 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.

ON October 31, 2011

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.

ON October 31, 2011

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.

ON October 31, 2011

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!

ON October 31, 2011

@ 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”. (I was posting “To Michael:” at the time).

ON October 30, 2011

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.

ON October 30, 2011

@ 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.

ON October 30, 2011

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!

ON October 30, 2011

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

ON October 30, 2011

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!

ON October 29, 2011

@ Captain Joe (and all others practicing active surveillance out there – 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” (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.

ON October 29, 2011

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?

ON October 29, 2011

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.

ON October 29, 2011

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).

ON October 28, 2011

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

ON October 28, 2011

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.

ON October 28, 2011

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.

ON October 28, 2011

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.

ON October 27, 2011

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.

ON October 27, 2011

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.

ON October 27, 2011

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.

ON October 26, 2011

@ 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.

ON October 25, 2011

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.

ON October 25, 2011

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.

ON October 20, 2011

Thanks for your input, Ken. I really appreciate it. A 2nd opinion of my biopsy is already underway.

ON October 19, 2011

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!

ON October 19, 2011

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.

ON October 16, 2011

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.

ON October 16, 2011

... 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

ON October 11, 2011

@ 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.

ON October 10, 2011

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?

ON October 10, 2011

The Award for Most Fear-Mongering Health Care Statement of the Year. http://technorati.com/lifestyle/article/the-award-for-most-fear-mongering/

ON October 09, 2011

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...

ON October 08, 2011

"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.

ON October 08, 2011

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.

ON October 07, 2011

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.

ON October 07, 2011

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.

ON October 07, 2011

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?

ON October 07, 2011

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.

ON October 07, 2011

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ON October 06, 2011

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.

ON October 06, 2011

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.

ON October 06, 2011

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

ON October 05, 2011

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.

ON October 04, 2011

A new book about PC by Aaron Katz MD entitled "Prostate Cancer" discusses many of our issues. Only $10 on Amazon.

ON October 04, 2011

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 — 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,” 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.” The report appears in the November issue of The Journal of Urology.

ON October 03, 2011

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.

ON October 03, 2011

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.

ON October 02, 2011

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.

ON October 02, 2011

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.

ON September 30, 2011

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.

ON September 30, 2011

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"

ON September 30, 2011

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.

ON September 30, 2011

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!

ON September 30, 2011

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."

ON September 29, 2011

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.

ON September 29, 2011

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

ON September 29, 2011

@ 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.

ON September 29, 2011

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

ON September 29, 2011

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.

ON September 29, 2011

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.

ON September 28, 2011

@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.

ON September 28, 2011

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!

ON September 28, 2011

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?

ON September 28, 2011

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.

ON September 27, 2011

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.

ON September 27, 2011

For Bruce: ---------- http://www.issuesinmedicalethics.org/043mi074.html

ON September 27, 2011

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.

ON September 27, 2011

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.

ON September 26, 2011

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.

ON September 26, 2011

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?

ON September 25, 2011

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. :(

ON September 24, 2011

Something I have not read before from the previous post (Ed) about the 29 year old: "Dr. Walsh warned that scar tissue forms after each biopsy, which can make it more difficult to separate the prostate from surrounding nerves if he pursued surgery."

ON September 24, 2011

Here is another prostate blog, written by a Urologist who "has his own disease". http://theprostatedecision.wordpress.com/

ON September 24, 2011

Interesting study. I'm personally at the stage where I'm weighing all opinions -- I think what Ed says makes a lot of sense but I'm also reading Dr. Walsh's book (and others) and seeking the full gambit of opinions. It is very tough to "swim upstream" against conventional medical opinion. I'm 52 now with Gleason 6. I'm currently trying to book a urologist who I know is at least open to "active surveillance". When it comes down to it I think I would rather live until perhaps 70 "intact" than until my mid 70s with urinary and E.D. problems. But maybe that's easy to say now and I'll feel differently in 10 years. Despite being leery of treatments, I don't know if I am confident enough in my opinion to totally forgo medical advice regarding active surveillance. I would definitely seek treatment if my PSA spiked sharply or my Gleason rating went to 7. Although Ed presents a good case I don't know if I have the mental fortitude to forgo follow up biopsies and PSA checks to monitor the cancer. Even urologists who are among the staunchest supporters of active surveillance seem to recommend monitoring. Michael - as a medical writer, and someone following active surveillance, I assume this is something you've considered. Is this a topic you would be willing to "wade into"?

ON September 23, 2011

A note about claims of 98% pc "cure" rates. As I've outlined below, for the most part these are people who would have been just as "cured" had they never been treated. There are few studies beyond 10 years -- so longer term survival, let alone a permanent "cure" is unproven. I have a good friend who recently passed away at age 84 after being "cured" of his minimal "organ-confined" Gleason 6 pc 15 years ago (his long pc odyssey being initiated thanks to PSA testing). Three years ago PSA began showing up in his blood again -- and suddenly he was no longer "cured." So in his last years, in addition to all the lingering side-effects he experienced post rp, he suffered through all the trials and tribulations of salvage radiation and hormone therapy. Talk to him and he would have told you "I guess they didn't catch it early enough." Talk to his wife and she'll tell you he died of bone cancer -- it couldn't be pc -- he didn't have a prostate. I wouldn't be surprised if his death certificate listed bone cancer as his primary cause of death (at this point in time the "system" would have a huge problem explaining an increase in pc death rates). Of course anecdotes are not evidence -- but I've personally seen this happen before -- and I've listed a medical journal reference documenting a similar case 11 years post rp. It happens. How often it happens is a big unknown. PC is usually a slow growing cancer that remains confined to the prostate. It is my contention that my friend might still be alive today, living with and eventually someday dying with "organ-confined" pc -- HAD HE NEVER HAD A PSA TEST. I've detailed in other posts below legitimate medical and scientific journal articles citing surgeries and biopsies as potential avenues for the introduction of slow growing pc cells into the bloodstream. The following is from a National Cancer Center Bullentin. May 31, 2011: "Long-awaited results from a U.S. clinical trial indicate that, in men diagnosed with localized prostate cancer, surgery did not improve survival or decrease the risk of dying from prostate cancer. After 12 years of follow-up, there was no difference in overall or prostate cancer-specific survival between men randomly assigned to radical prostatectomy and those assigned to watchful waiting," NO DIFFERENCE! I contend that as this progresses in time, mortality from pc may very well increase in the rp treated group ... that is when the s**t will really hit the fan ... and the PSA testing jig will finally be up. NO DIFFERENCE in survival rates! But of course there was a huge difference in the quality of life between those treated and untreated -- and each and every one of them treated or not, had to live those 12 years under the mental burden of being a "cancer" patient. So the first half of "Merck Law" has pretty much been proven out. Its the impossible to prove other half ... (i.e. there is also NO DIFFERENCE in outcomes for treated and untreated high grade pc) that most doctors intuitively know and most patients just refuse to accept. Treatment has to help ... that's why they call it "treatment." Doing something ... anything ...has to be better than doing nothing. But various studies show that high grade pc has a 5 year survival rate of around 30%. There's just no way to know if that might be 2 or 3 or 4 or 6 or 8 or 10 years without the extremely debilitating psychological and physical stress of the various (unproven) treatment regimes they must suffer through. (for a great take on all that read NY Times editor Dana Jenning's sad story -- when I read his very first post about 3 years ago my only thought was "dead man walking" -- he was posting pretty regularly until late last year and there's been nothing at all about him anywhere since -- I imagine that is not a good omen -- you can find it here: http://well.blogs.nytimes.com/tag/jennings/ ) Of course its understandable ... its human nature, even with 100% fatal brain gliomas, everyone fights, everyone hopes, everyone thinks they might be the one to beat the odds -- they desperately seek treatments and for-profit medicine gladly obliges -- even encourages them on ... to the very end. Just as so many people have an unrealistic fear flying because of the devastating scenes of airplane accidents ... most people have an emotional and unrealistic fear of cancer because its an equally devastating cause of early death. For profit medicine panders to those fears. It has elevated the risks of dying of pc (and many other cancers) in the minds of many far beyond rational thought with respect to other risks we face. The concept of "sometimes its better not to know" with respect to pc is a philosophy of life issue every man has to decide for himself. Alternately you may chose to "believe' in AS (active surveillance) ... a scientifically unprovable as well as implausible concept. It holds that biopsies, while clinically riskier and riskier with every one you have, are biologically harmless. And that by repeated biopsies -- at arbitrarily chosen time periods, you and your doctor will be able to determine exactly when your particular pc is about to "morph" from benign to aggressive and that "NOW" is the time for treatment. OK. Yeah, right. Good luck with that.

ON September 21, 2011

Tony, if you haven't done so already, you may want to go back to the many earlier entries on this site. Legitimate questions are raised about the wisdom of biopsies and other treatments for suspected PC that could affect your decision. In my case the recommendation for the biopsy was based solely on an elevated psa, though I have no other symptoms and the DRE was okay, though my prostate is somewhat larger than normal. I would not be surprised at all if a biopsy showed I did have PC since close to half of all men in our age category have some PC, but even if it did, it's questionable whether radical prostate surgery or other treatments would make sense. You may want to delay your biopsy to do more research if you're really hesitant.

ON September 21, 2011

I have been shocked at what I have read on many sites which describe experiences of many men who have submitted to biopsies based on a single psa test that is higher than the previous test, yet still lower than 4. I am not generally averse to medical procedures, such as colonoscopies, but the diagnostic and treatment regimens associated with PC seem to be in an entirely different category. As you have pointed out, Ed, doctors are often practicing CYA in how they deal with psa results. As evidence of this, when I refused the biopsy, I later received a registered mail letter from the urologist which required me to acknowledge by signature that I declined the biopsy, no doubt to cover themselves should I ultimately suffer from advanced PC. Along these lines, now that I have decided to get off the psa merry-go-round, I am wondering if my regular physician, being advised that I won't allow any more psa tests, will now be more inclined to "find" suspicious abnormalities during DRE, since that becomes my last line of defense, so to speak. By the way, one of the reasons I am skeptical of psa results is a friend of mine recently was diagnosed with PC which was found during DRE. His psa was less than 1, yet he had a significant cancerous growth in his prostate. How could that NOT have elevated his psa? One other anectode: I recently heard a report on NPR re: psa and PC in which a middle-aged physician refuses to test himself for psa for the very reasons you have set forth in your postings. I only wish I were better informed when I first let my Dr. start doing psa tests about ten years ago. Once again, thanks to Ed and the originator of this informative site.

ON September 19, 2011

Thanks for the response, Ed. You are correct, the urologist did not even mention the possibility of testing for bacteria before prescribing the antibiotics. There is one statement in your posting I want to ask about: you say that the biopsy findings are almost always going to be ambiguous, including the Gleason score, would not give you a good idea of the real nature of your PC (I'm paraphrasing here) I have read elsewhere that the Gleason score is fairly reliable in predicting how aggressive your PC will be, based on a pathologist's analysis. I take it you do not accept this or your research does not support it, but I would be interested in hearing more on that topic. Thank you very much for being an independent voice in this ongoing PC debate.

ON September 17, 2011

For Bruce. Whether or not you stay on the pc merry go round ... please find yourself some new doctors (good luck!!!). I hate to hear stories like this. First of all, true bacterial prostatitis is very rare. In my opinion handing out antibiotics to someone with no symptoms and an elevated PSA simply to "try" something easy borders on malpractice. I doubt if either doctor made any attempt to verify that there was bacteria in your prostatic fluid (its not that difficult to do). In fact all they may have done -- is help create a strain of antibiotic resistant bacteria within your body (and increase the risk of serious complications if/when you ever have that biopsy or you really need antibiotics). On the other hand, most doctors work to "guidelines" and "standards of care" and your uro could have been accused of malpractice if he hadn't offered you a biopsy. Whether its PSA's or biopsies or any other medical test -- most people seem to agree to them without fully informed consent. Hoping for a negative result and without a clue as to what they will do in the event of positive findings. Here is a pretty interesting pc risk calculator based upon the very large PC Prevention Trial studies: http://deb.uthscsa.edu/URORiskCalc/Pages/uroriskcalc.jsp I don't have all your data but just guessing at some things and plugging in some of your numbers it came back with a 42% chance that a biopsy of a man with your stats would find pc. (try it out yourself) And I think its interesting ... only interesting ... that the autopsy studies I have cited in other posts found pc in 44% of men in your age group who died of unrelated causes.. So there's no real difference -- whether based upon your individual stats (your personal "numbers") or simply because of the age group you belong to ... there's about the same pretty good chance that a biopsy is going to find that you have "cancer." So why not just skip the biopsy go right on to treatment? (Or better yet right on to "watchful waiting?") But lets say you did go ahead and get a biopsy -- and the flip of the coin went against you? What will all these further "numbers" -- the cores, the percentages and the gleason scores tell you about your odds of dying of pc? I say -- for the most part -- absolutely nothing. I say for the most part -- because there is a slim chance that they might indicate you should get your affairs in order. Other than that, most prostate biopsy findings are totally ambiguous with respect to providing any definitive useful information with respect to indolence or aggressiveness and eventual pc progression. Just read some of the postings here -- of men with the slightest traces of pc on biopsy being pushed towards surgery by their doctors. (More "standards of care", "can't ever catch cancer early enough") The only thing your biopsy will indicate with certainty is that you are now a "confirmed" cancer patient for the rest of your life! Even if you get lucky and your first biopsy comes back negative. What then? Cheers? Hurray? Celebrate? Not hardly ...other than the fact that biopsies find pc when its there only 70% of the time ( the needle just misses) ... here's where the real merry-go-round part comes in -- in the coming months and years they'll be lots more PSA's and lots more biopsies and I guarantee that sooner or later they will eventually find your "cancer." When you buy a ticket (a PSA test) on this ride -- they let you on ... but never let you off. PSA TESTING IS TOTALLY USELESS AND HARMFUL AND A PUBLIC HEALTH DISASTER. If you want a just a little bit of reassurance in your decision to not get a biopsy just look at the two previous postings of Ken and Maurie. Both with PSA's around your level ... both with biopsy findings of minimal pc. Maurie's already been on the merry go round for 8 years and Ken's about to take a permanent seat next to him.

ON September 12, 2011

Correction ... Here are my stats ... Age 61 PSA 5.6 up from 3.9 one year ago negative DRE size of prostate - 42 cc Biopsy 1 of 14 - <1% of 1 core (.3 mm in length). Also, I have recently within the last year been diagnosed with mild Rheumatoid Arthritis (RA). PSA starting rising at onset of RA. I found 2 studies that concluded RA creates mildly elevated PSA reading. My urologist wants me to start the PSA Test/DRE/Biopsy regiment or he will not follow me. The biopsy sucks. Blood/blood clots and pain for weeks. Any Comments ... Thanks, Ken

ON September 06, 2011

Hello Ken No, I do not have a biopsies done each year. I think it is overkill.

ON September 02, 2011

Richard, I like your attitude about life and death ...very European. And you should know that its downright un-American to not want to find and valiantly fight and "battle" your prostate cancer. You sound like you have good reason to be skeptical about your urologist however you shouldn't be so totally cynical about them all. If I were you I would begin a search for an honest, competent and caring urologist. He more likely than not, will be able to greatly improve your quality of life. Your symptoms sound beyond the help of drugs but there are proven treatments that can help you. I myself would probably insist on trying TUNA as an initial treatment before any of the more invasive procedures that carry a greater risk of complications. I like to play the odds ... and the odds are that your slightly elevated PSA is most likely caused by BPH. And while BPH and PC can coexist, BPH is associated with a lower risk of aggressive PC ... so the odds are also in your favor there. Your genetics and family history further serve to push any serious PC out of the picture. Find a good urologist ... I think you are going to need one sooner or later. And BTW, the doctor who biopsied your 85 year old dad looking for pc should have his license revoked. Again, if it were me I would file an ethics complaint with your state medical board.

ON September 02, 2011

I am 60 yo and know I have had BPH for years. The symptoms have grown worse (dysuria, mostly -- I've gotten up during the night two or three times to go to the bathroom since I was 12 yo, so I discount that) and I started getting what I thought were urinary tract infections. I found a urologist online and didn't like him from the start. He kept asking me about prostate cancer history in my family (none but one great-uncle out of about 25 great-uncles) and seemed not too interested in other stuff. He and the technician did a digital ultrasound DRE without explaining anything and talked to each other in a foreign language. The next week, when I went to see the technician for the urinary output test (I retained almost half of it), the technician told me that there was no reason to suspect I had prostate cancer as they saw nothing irregular except a very enlarged prostate. Next week, urologist gives me script for Flomax and sends me off for blood and urine tests. Then a week later I get a call I must call him "urgently." Day after, he tells me I have a PSA of 6 and we need to biopsy immediately. I am still taking antibiotics prescribed by my primary care who suspected prostatitis, if not a urine test. I schedule a biopsy but then start reading and decide to cancel. My 85 yo father had a prostate biopsy just a few months ago (WHY?) and he said it was "a nothing procedure that will put your mind at ease." Yeah, well, he had no prostate cancer at all at his age. I probably wouldn't be so lucky. I have decided just to treat my symptoms and not have another PSA and not have a biopsy. My prostate and I will die together, whether in a few months or whenever. I have come to the conclusion it's a scam. If I am one of the unlucky ones, I will die. Big deal: I'm 60, no spouse, no kids, done everything I wanted to do in a great life, would like to live a little longer but I'm OK with dying now. My friends work at the local hospice and will take care to make sure death from pc isn't too bad if my luck is indeed bad. I am told I am in denial, must be depressed, etc. I feel I am acting rationally. I would tell men NOT to have the PSA test. I sort of felt that way before and should have listened to my gut feelings and refused the test. This urologist admitted that I could live 10 years if he found prostate cancer, but started saying that the radical surgery will ensure that I can live not just to 70 but to 80. I said that prostate cancer may not run in my family, but Alzheimer's does, and if I had to live from 70 to 80 the way my mother has with Alzheimer's, I'd much rather die of PC. Even another urologist told me he thought it was weird that the doctor would be telling me how much better the surgery is over radiation before I even had the biopsy. I just had the feeling from the first time I saw this urologist, his goal was to cut me open. Am I crazy?

ON August 30, 2011

Thanks for the response and the link Ed. I've printed out the report and it is a piece of information, amongst others, that I'll consider. You bring up some unorthodox but interesting observations. If I had the choice to somehow go back in time and not know that I have prostate cancer I think I might choose that option. The only positive thing that knowing is that it allows me to make a few dietary and lifestyle modifications that may make a difference in cancer progression. I also now give greater value to the important things such as family and friends. If I could do those things without knowing, I'm fairly sure I would chose not to know. A cancer diagnosis is devastating and the pressure to chose surgery is absolutely immense.

ON August 30, 2011

My involvement began when my dad was obscenely "diagnosed" by PSA testing and treated at age 85 in the mid 1990's as I've detailed in an earlier post. My younger brother at 55. I've lived and worked in Europe where two of my best friends are urologists. My research has been supplemented by their real world experiences. Early detection and "curing" PC is a myth pure and simple ... perpetrated by our medical industrial complex. Men with serious PC will die from the the disease and any treatment will most likely shorten their lives or make whatever time they have more miserable. Men with benign PC will most likely die of something else IF LEFT ALONE. However, if they are diagnosed by biopsies and/or radically treated they INCREASE rather than decrease their odds of eventually dying of PC by risking the spread of cancer via biopsy and surgery ... as well they get to live the rest of their miserable lives in fear of recurrence as cancer "survivors". Credible sources like the Merck Manual for Physicians have had it right for years: "Screening is based on the hypothesis that early detection allows treatment of the cancer while it is still localized, thereby reducing mortality. However, the hypothesis that early treatment reduces mortality is unproven. 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." Case closed! BUT OUR FOR PROFIT MEDICAL SYSTEM IS ALL ABOUT RAKING IN THE DOLLARS MARKETING ALL MANNER OF UNPROVEN TREATMENTS AND PROVIDING FALSE HOPE. Here's another example from today's news: http://www.azcentral.com/news/articles/2011/08/29/20110829tempe-detective-tim-barber-cancer0831.html. Its unfortunate but true: some men regardless of their age will get the deadly form of the disease and no amount of early detection and treatment is going to save them. This poor soul spent his last few years in treatment misery advocating that all 35 year old men get PSA tests! My dad died at 89 of congestive heart failure with his PSA well over a 100 and no obvious signs of metastatic cancer. If widespread PSA testing had been introduced in the early 70's rather than the 90's I doubt if he would have ever made it to 75! (UNLESS he had been lucky enough to have avoided the medical system and never got a PSA test).

ON August 27, 2011

John F - Do you have biopsies done each year?

ON August 23, 2011

Jim A lot if people swear by RCOG but it seems to me they overtreat.

ON August 22, 2011

TREAT YOUR PROSTATE CANCER WITH BIOPSIES AND SURGERY??? Another anecdotal story from todays news 8/22/2011. I always wish I had access to the full medical records when I see these stories in the news. See some of my previous posts for other examples of similar stories regarding the deaths of famous people in the news. Check it out yourself: "Jack Layton" "Canadian opposition leader loses second battle with cancer." READ BEHIND THE LINES OF THE NEWS STORIES! Cancer spread after "beating PC years ago! Recent surgery for a broken hip! (You can bet it was from androgen deprivation drug therapy). I've seen this same thing happen too many times with friends and relatives. Many who I think would be alive today if they never were given a "cancer" diagnosis to begin with.

ON August 11, 2011

First of all, I think it is extremely poor taste for this Larina sara to use this forum for marketing purposes. Some people have no scruples. Just had my appointment with the urologist. As expected he recommends surgery but doesn't seem to have too much problem with me taking a year of watchful waiting. Some of the points he brings up: - Younger, healthier men such as myself generally have much better outcomes regarding potency and urinary function after treatment. If I wait this outcome could get worse. - There is always the potential for Gleason 6 to morph into Gleason 7 (or perhaps I could already have undetected Gleason 7). If this happens the potential for nerve sparing is reduced. Not the easiest of decisions. Any thoughts or advice welcome.

ON August 08, 2011

I understand Murray. There is only one 5 year study that I know of and that was done by a company that has a stake in Cyberknife. Even still, that study listed a "bio-chemical progression free 5 year survival rate" of 93% and an impotence rate of 19%. Considering the fact that Cyberknife can only be used on low risk prostate cancer, those figures don't look that good to me. Good luck!

ON August 05, 2011

Murray If i were to decide to have treatment, I'd probably choose cyberknife. As for discussing this with your urologist, do you think he is going to give an unbiased opinion? I'd consult with a medical oncOlogist who specializes in prostate cancer. And you probably dont need to even think about cyberknife or any other treatment for years. By then, they'll probably have something even better.

ON July 31, 2011

Murray Stop worrying. Nobody ever died from a Gleason 6. If you really decide you need trestment, look into cyberknife.

ON July 30, 2011

To Murray You are not too young for WW. I started at age 53. That was eight years ago. 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. You may never need it. Why give up your sex life at such a young age?

ON July 25, 2011

Recent PC diet foods from Web MD. site.http://www.webmd.com/prostate-cancer/is-there-prostate-cancer-diet

ON July 25, 2011

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ON May 19, 2011

michael you have not posted since April 10th. I see nothing else since.

ON May 13, 2011

Sorry ... one more ... I've mentioned this risk in some of my previous posts ... now its being documented and proven. Here's another nice side "benefit" of "active surveillance" (a.k.a. perpetual "patienthood") (a.k.a. guaranteeing a future income stream for your urologist) (a.k.a. submitting to regular recurring prostate inflammation that might promote metastasis) (a.k.a. seeding pc cells into your bloodstream on a continuing basis) ....... ........ From the LA Times, May 2011: “Among the millions of men tested for prostate cancer around the world each year, doctors are detecting an alarming trend: An increasing number of patients are getting sick from potentially lethal, drug-resistant infections. Studies emerging during the past year have uncovered that a small, yet growing percentage of those undergoing routine needle biopsy tests are becoming critically ill and dying from bacterial infections.”

ON April 18, 2011

Does anyone in this discussion know about the pca 3 test, which has been used extensively in Europe, where it is considered more accurate that the PSA?

ON April 13, 2011

A couple of weeks ago I saw on this site, a list of causes of death for the overall population.It was listed from the most numerous to the least. I believe heart attack was number one and down near the bottom of the list was PC. I can't find the link to it again. Does anyone know where it is. Thanks.

ON April 10, 2011

I agree Michael and put that same sentiment in my last e-mail dated April 5th. I have not e-mailed since on the subject, nor do I intend to since there is nothing to say that hasn't already been said. Regards, John.

ON April 10, 2011

Owen, I see a medical oncologist to monitor me because he doesn't have a bias or ax to grind or dog in the hunt. However you want to put it. And i am on avodart now not proscar. Both work to shrink the prostate and there is some evidence that avodart ( but not proscar) kills cancer cells. I have noticed no side effects from either except for a slight reduction in semen volume. I would not do hormone therapy - the side effects are extreme. Hope this helps.

ON April 07, 2011

Ask your doctor if ....... a prostate biopsy ........ is right for you. ................................................ I've already detailed in previous posts, legitimate medical journal articles that should make anyone question the need and usefulness of prostate biopsies. Here's another reason to think twice before an m.d. in a for-profit health care system recommends that you get one. ............................... From the Las Vegas Review Journal Mar. 31, 2011 | 3:21 p.m. : " Second doctor tells medical board he reused needle guides in biopsies " ............................................ EXCERPTS: "A source close to the state's infection control efforts said Newman, like Kaplan, told authorities that a vendor had said the plastic needle guides could be used more than once. A vendor told Kaplan, whose medical license has been suspended, that the plastic needle guides could be used three to five times, according to an ad written for the Review-Journal by Kaplan attorney Dominic Gentile. Authorities said Kaplan, against whom the board filed a more detailed formal complaint Wednesday, stopped using single-use endocavity needle guides only when they became "too bloody." .......................................... "Gentile said he expects that many more doctors than Kaplan and Newman have reused the single-use needle guides in Southern Nevada: "I have had five or six doctors call me and confirm that's what they were told, too. " Gentile now believes, however, that the problem is a national one, not just one affecting Nevada. He said Providian distributes CIVCO equipment throughout the nation. "My best guess is we're talking about thousands, maybe tens of thousands of people, who have had biopsies done with reused single-use devices," ............................................ "They're businessmen, not doctors," ..........................................."After procedures using the disposable needle guides, medical assistants would attempt to clean and disinfect the needle guides by running them under water, attempt to scrape out any remaining tissue or blood without using a brush and would then soak them in Cidex solution and allow them to dry," the complaint states. "Often bits of tissue or blood would remain after attempted cleaning and disinfecting. Guides were disposed of after becoming too bloody."

ON April 06, 2011

Here's a thought experiment that perfectly illustrates John G's dilemma as well as the overall health care mess we have on our hands in this country. Most people are simply unable to grasp the abstract concepts involved in the statistical basis of modern medicine. The doctor's blog I referenced earlier mentioned NNT (number needed to treat), an epidemiological measure used in assessing the effectiveness of a health-care intervention. For example most of the schmucks I know out there who are faithfully taking their Lipitor everyday have no idea of the NNT for statins (its about 200). Yet just about every one of them I talk to, as they pop their pills along with their fast food, thinks that Lipitor is going to save them from a heart attack. Its like that for many drugs. Some manufacture has proven some minor statistical benefit over a placebo, the FDA approves, they market it to doctors and directly to consumers, clueless Americans demand it, and we all pay for it through our insurance premiums and medicare. But back to PC. Keeping this thought experiment as simple as possible, the NNT for RP in one small PC study I cited was 25. Meaning 4 of 100 men would be saved if all were treated. Stated another way 96 men would have been treated for nothing. Or 96% of men told they have PC would be just fine had they decided to do nothing. A later bigger better study showed an NNT of about 50. Meaning about 2 of a hundred men would be saved if all were treated or a 98% survival rate with no treatment. (As an aside, I personally like those numbers those numbers just the way they are...they are good enough for me.) But for our thought experiment lets just say someone does that even better, impossible to do study, of a million men age 55, follows them for 30 years and comes up with an NNT of 100. So now for our thought experiment we have a 99% survival rate without treatment! And lets say that the rate for deaths on the operating table for RP and post surgical complications is 1% (I know it isn't). Our hypothetical John G. has just been given a PC diagnosis and is being recruited to join one of two groups of 100 men. Group A will be not be treated and within 10 years 1 of the 100 men will be dead from PC. 99 of them will go on to live normal happy lives. Group B will be treated with RP and 1 of the 100 men will be dead in 10 days from the complications of surgery. Many of the remaining 99 will be harmed, they will be impotent and incontinent and live the rest of their miserable lives in dread as former or future cancer patients. Which group does John G. join? Maybe its human nature, maybe its lack of education, it certainly is lack of understanding .... but I contend that even under the clear-cut circumstances of this thought experiment, John G. and most men will still choose Group A. They will clamber to get into Group A. They've been told they have cancer. If you have cancer you go to the doctor to have the cancer removed. Each and every one wants it cut out. No one wants to think of themselves as a statistic. Each and every one "believes" that their particular surgery will save their particular life. Its impossible for them to comprehend that it takes 100 surgeries to save one life. ........................................... We as a society, are all paying in spades for this kind of faulty thinking, and in the case of PC, with blood as well as money.

ON April 05, 2011

Sorry, I am back for an encore performance, before Ed can get in his last word, with a case in point. Dr. Grace Lu-Yao headed a study of 9000 men with prostate cancer and found the following: Only 10% had died a decade later. Furthermore, the vast majority were alive without significantly worsening symptons or had died of other causes. She also found that even the 30% who eventually sought treatment were able to delay it an average of 11 years. DESPITE ALL THIS, WHEN I E-MAILED HER REGARDING MY CIRCUMSTANCES, SHE TOLD ME THAT BECAUSE OF MY AGE, I SHOULD BE SEEKING TREATMENT. OK, I’M DONE.

ON April 05, 2011

From the New York Times, February 5, 2008 .................. titled: "No Answers for Men With Prostate Cancer" ......................... QUOTE: "Surprisingly, no single treatment emerged as superior to doing nothing at all." ............................................Sounds about right to me. Sounds about exactly what Stanford ethics professor Dr. Robert F. McCauley M.D. was trying to tell people in 1996 as PSA testing went viral in the USA. John G. would have you believe that the NYTimes and Dr. McCauley and I are all lunatic co- conspirators.

ON April 05, 2011

Ed, I refuse to bandy words with a LUNATIC (I like my wife's word for you), so I will make this short (for a change) and to the point. To clarify, the exact words from Dr. Walsh’s book regarding the distant metastases before surgery are as follows: “...the cancer had spread to distant sites (like bone) before surgery, in the form of invisible, impossible-to-detect, distant metastases”. As far as my research is concerned, the doctor’s book hardly is the extent of my reading. I didn’t say that research was exhausting and time-consuming because of reading one book, but at least I can say I read it. How about you? If you haven’t, then that, in my eyes, is the equivalent of an ostrich sticking its head in the ground. Now, for god’s sake, go bother someone else! Thankfully, nobody is buying the “Don’t bother to find out if you have prostate cancer, but, if you do find out, then you should do nothing” sales pitch. (I hope you’re not working on commission - a little exit humor).

ON April 05, 2011

Here's 2 (ethical) M.D.'s talking on another blog: ................... I have written before about the uselessness of screening for prostate cancer in the past, which brought on the vitriole of some of my fellow MD bloggers, some of whom had vested financial interests in the perpetuation of this looney practice. But now we have none other than the inventor of the Prostate Surface Antigen (PSA) test, Richard Ablin, coming out to say today in an editorial that it is not only useless, but a public health disaster. He points out that 16% of men will be diagnosed with prostate cancer, but only 3% will die of it. The PSA is used to drive men with mildly elevated values into the medical machine that will leave them with medical bills, possible impotence and urinary problems. In spite of this, PSA testing was not shown to save lives in a US study I wrote about last year here. In the editorial he writes: I never dreamed that my discovery four decades ago would lead to such a profit-driven public health disaster. The medical community must confront reality and stop the inappropriate use of P.S.A. screening. Doing so would save billions of dollars and rescue millions of men from unnecessary, debilitating treatments. ........................... another urologist responds: .............................MD says: – ….NNT, false positive/false negatives, NNH blah blah blah so Mr. Smith I really don’t think prostate screening tests are likely to be useful (now MD is 30min late for next appointment having spent time explaining this but will not be paid extra) ............... Patient says ......... But doc, my neighbor died of prostate cancer and his wife said he would still be alive if he’d had that test. Plus my insurance covers it anyway. And how do you know if I’ll die with prostate cancer or from it? MD says .........–(sees visions of angry family and malpractice lawyers with expert witnesses) Here’s your lab slip Mr. Smith. ........................... Stanford M.D. and professor of medical ethics argued in 1996 that it is unethical to screen for a disease for which there is no proven cure. Additionally he quotes from one study about radical prostatectomy that showed: "Twelve of 14 consecutive patients undergoing this treatment have been shown to have seeded prostatic epithelial cells in the general circulation when their disease was shown to be organ-confined prostate adenocarcinoma. The implication is that surgery for a tumour with a low metastatic potential, itself, may be an important metastatic mechanism."

ON April 04, 2011

Unlike John (aka Luke) I'm sorry for your horrible urological experience Gerard. All of it ... esp. seeing how it came on the heels of just having dealt with and survived a real cancer. John says you should have never had a biopsy ... unfortunately he seems to have no clue as to why you got one and some unethical doctor is recommending more i.e. its because once a urologist has paid for in his little TRUS biopsy machine every one he does is pure gravy. Unfortunately, its the same with things like his laser cystoscope purchase ... whether or not that may have been the best mode of removal for a symptomless stone that was found on CT and may or may not have needed immediate treatment. For-profit medicine in the good old USA. Sounds like you were a practice patient. Since we are are not talking ... for John ... here is another poor guy's story I just came across on another blog. Like John, he was and is still a believer. His case ...like the other one I cited of lung metastasis 11 years post-treatment are eerily similar. It happens too often and I defy anyone to show me statistics that prove or disprove how often that may be. They are not kept unless the data is being tracked as part of a study ...and there are few studies longer than 10 years. Its not talked about. Its not a risk explained to most men before biopsies or surgeries. There is a long lead time between the introduction of slow growing PC cells into the body via biopsy or surgery............... " Mike W. said... Great blog idea! I was biopsied in 2000 with results indicating a faster growing type. Gleason score was just above the comfortable line (I forget the numbers). A random PSA test at 50yrs old (in late 1999 actually)indicated a higher PSA than recommended (just above the 4.0..I think 6 or 7) which led to the "treatments". Surgery, radiation AND Lupron Depot (no fun at all). Ok for several years then rise to 1.8 and back on Luperon. 3 years then (this month) a very small PSA detected (.4) which led to retreatment with 6 month version of Lupron. Will be continued for 2 years or so. All this to ask "How would I have known about the cancer without the biopsy?" The rise in PSA alone was not enough. What might have happened if I had done nothing? (I am 62 now by the way). It is always a hard decision as a "patient" since any of the treatments are worse than the disease (at least early stages..I'm not talking about metasticized). The treatments affect intimacy, energy and a range of other things." .................. Mike is a believer. He asks "What might have happened if I didn't have a biopsy?"... as if the biopsy "saved" his life because it found his cancer ... without a clue of recognition that it takes giving 48 men biopsies and prostatectomies and lupron to extend ONE life 10 years. That the odds are he would have alive today if he had never known. Everyone treated thinks they are that ONE. My reading of all available studies and data says that this guy might have been just fine today AND without metastatic PC had he HE NEVER KNOWN. He might have just had, as most 62 year old's have .... nothing more than ARPD (age related prostate degradation) ... something every man will get to some degree if they live long enough. He might have lived the last 11 years without a care in the world and without a single symptom. I've got lots of data to back up my position. The other side has "believers."

ON April 04, 2011

In my case I would have to agree with Ed. I am older than most guys on this site, 68, and my story unfolds differently. I really rather have not known I had PC. I am a gleason 6 with two biopsies. Five years ago I had a large lump in my groin and the surgical biopsy showed I had non-hodgkins lymphoma. I started chemotherapy a month later and continued for four months every other week and some for the entrie weekend during a clinical trial at MSKCC in Manhattan. After PET scans and several CT scans, I was essentially free on the cancer by six months. I have been going for CT scans and visits since August '06 and have shown to be tumor free. After my last CT scan in Oct.2010, my oncologist saw a bladder stone which was 2.4 cm9 Too big to pass on my own). He recommended surgical removal. I then went to a urology oncologist at LIJ which was closer to my home on Long Island. The doctor wanted to check things out of course and didn't like the digital. He felt a rough surface and so wanted to do a prostate biopsy prior to the laser surgery. Two years prior i had seen a new urologist and he also said he felt a rough surface with the DRE and he wanted to do the biopsy. I contacted my lymphoma doctor and told him and he said don't bother. The rough surface was due to the calcification of my prostate which he had observed over the years via the CT scan. So I did not have the biopsy at that time. I told the LIJ doctor about the CT results and he wasn't impressed and basically said i had to have this done prior to the bladder stone surgery. So it was done in Nov. 2010 about one month before my 68th b-day. The results were 10% PC in one core of 12 with a gleason score of 6. He told me I needn't have anything done now and just WW. My PSA was 2.88 at that time and only the 2nd time it had been over 2 that I could recall. I had the stone lasered thru the penis in Dec., and suffered much with the catheters. After taking it out on day 2, I ended up in the local hospital ER due to not being able to pass urine. it as put back in there. Three days later it was taken out and once again I ended up in the ER due to not urinating. A week later it was out and all was well. Not being able to urinate was very painful and I thought my bladder was going to burst those two times. After that my wife insisted I get a 2nd opinion about the PC, so I went back to MSKCC three weeks after the laser surgery and saw their oncologist for urology. He performed a DRE and did a PSA right afterward. I told him about my three catheters and the problems just 3 weeks prior and it was probably partially due at least to my BPH. My PSA was 4.55 when the results came in the next day. I have read sticking numerous catheters in and doing a DRE then doing a PSA is probably not going to give an accurate result. This was done by a doctor at a renowned cancer hospital. Even I know that this is not the way to get an accurate PSA. Well, the prostate biopsy 6 weeks later and it was 30% of one core out of 12 and a gleason 6. I was told this was very minute cancer and to continue WW with PSA test in 6 months with a biopsy next year and see from there. The doctor told meI wouldn't die from this cancer and the chances were less than 5% that I would. Now I have this diagnosis and wish I was kept in the dark, and think about what Ed says just to put it away and not concern myself. But the seed has been planted (no pun intended) and I can't try to forget it. If I only did not have CT scan, bladder stone, calcified prostate, etc., maybe...