RE: Re: Active surveillance now acceptable - who knew?

June 10, 2011

As for thinking 20 or 30 years out, I cannot imagine that what passes for PCa treatment today will in any way resemble what PCa treatment will look like 20 years hence. At least I hope that it does not. It would be really regretable if the treatment for this disease remained unchanged over such a long period of time. I recall the story of a man who due to E.D. had an penile implant that went horribly wrong and left him permanatly deformed as well as unable to ever use his member for it's intended purpose again. . He sued his doctor claiming that the doctor knew, or should have known that Viagra was about to be approved a few months after his operation (which it was) and he should never have had the surgery to begin with. Now, I do not know

the merits of the mans claim against his doctor. Maybe he did know and maybe he should have known. Perhaps this particular patient may not have benefited from Viagra, but that is something he would never know. I do not know how his lawsuit went, but it's a perfect illustration of how an accepted , common and well established treatment protocol can be made obsolete almost overnight. The same happened with respect to stomach ulcers and stomach cancer. One day stomach ulcers and the danger of contracting stomach cancer from them was the gastroenterologists Bogey man. Then , within months of a very simple discovery, it became an illness curable with a few dollars worth of antibiotics.

With dozens of clinical trials currently underway with immunotherapy drug candidates and advances in stem cell therapy, genetic engineering, advances in imagery that will allow doctors to view and track cancer without the need for surgery/biopsy etc. , 20 years hence can be awfully long time and provide very good odds to the man who feels that his current quality of life is paramount to his needs. . The problem has been that until very recently, the idea of a man living with PCa for 20 years was unthinkable. Standard medical practice was to advise patients whether or not they would survive 5 years with or without treatment. Beyond that time frame you were considered as much as dead and beyond the abilities of modern medicine to treat. People need to remember

that the 5 year survival rate was established decades before it was known the nature of prostate cancer as opposed to most other cancers where cure rates are in the single digits and the 5 year survival rate a very reliable estimation of a man's potential lifespan. PSA and the local biopsy have allowed PCa to be Dx many years before it otherwise would have and in it's earlier stages. So, the 5 year survival rate means very little with PCa unless it can be determined that the patients cancer is of an aggressive nature. Then it would be of great importance. But the irony is that men with aggressive PCa are the most difficult to treat no matter what age they may be. It is not so much the age of the PCa patient that is important, as is the nature of the cancer that the patient has contracted coupled with the patients own unique immune system qualities to fight the cancer. As we have learned from the HIV population, a compromised

immune system leaves the patient defensless against virtually all diseases, including the contraction of some form of cancer. More importantly, that cancer contracted by people with compromised immune systems more often than not has a very short and deadly course.

I agree that one should get a second opinion too but the patient should always bear in mind that if he intends to do AS, that the more opinions he gets the more likely that the vast majority of those opinions will be against him doing so. Most doctors today who treat PCa are almost universally against AS. So, if you find one doctor who is willing to go along with your experiment, the next 10 you come into contact with will likely be very much against it. The question comes down to this; do you want to make the decision as to how you want to proceed, or, do you want the doctors who are in the majority opinion to make that decision for you? At present, your odds of finding a doctor who is willing to follow you as a patient doing AS are still pretty slim indeed. Because cancer is such a frightening disease most patients ultimately do leave it up to their doctors to

make a decision as to whether or not to be treated and leave it up to the patient as to which treatment modality shoud be chosen. Seldom , if ever, is there an option for AS discussed or put forth. For most mainstream doctors this is definitely not an option to consider at all.

I believe that virtually 100 pct of the men who choose AS do so against the wishes and advice of their physicians. Which makes good sense for the doctors, even if they believe that AS may be a viable option for that specific patient. Why? Because no doctor under the current set of guidelines for treating PCa can be faulted for recommending any one of the standard methods of treatment once they have possession of your PSA, Gleason , imaging scans, biopsy etc.. On the other hand every doctor stands a very good chance of facing some disciplinary action by their state medical board or even a lawsuit from the patient in question should they go along with AS and cancer progress at an unexpected rate or something else untoward but related to PCa happens to the patient. Even if it was the patient who insisted upon using the AS. option.

Because his lawyer will simply say that the patient was never medically qualified to have understood the risks of that decision in the first place. Even if the patient was fully aware of the chances he was taking. That is why the deck is stacked against the AS option and why all doctors recommend some sort of treatment , even if they know for sure that it may not do that specific patient any good. The system for cancer treatment as currently set up in the Western model is to always recommend treatment.

Strangely enough however, should the patient die on the operating table or as a result thereof within days of the operation, or should he die as a direct result of radiation treatments or hormone ablation treatment or any other medically accepted treatment, the doctor bears no responsibility for the patients injuries or death. So long as the treatments he prescribed are within the institutionally accepted standard of medical practice for PCa. Virtually all cancer treatments are in effect experimental and no one really expects cancer patients to fully recover (i.e. be cured by their doctors treatments). If by chance they are cured, that's great. But if they are not, no one ever faults the doctor for the patients failure. That is so long as the doctor abides by and adheres to the treatment protocols established by his profession.

Thank you Alan and I agree with the advice to patients you have given here in your message. Patients need to take responsibility for themselves and do all the research that they can and ultimately make a decision based on the known facts of their disease as well as understand and accept the nature of the life they will live after treatment. That's the best any man can do.

BOByer wrote:

Subject: Re: Re: Active surveillance now acceptable - who knew?To: ProstateCancerSupport Date: Friday, June 10, 2011, 4:48 PM

There's a good article on active surveillance at:http://www.prostate-cancer.org/education/localdis/klotz_activesurveillance.htmlThere are a number of criteria proposed for active surveillance but a key oneappears to be Gleason score. One study cited by the article says between 10and 23% of men with untreated Gleason 6 cancer will die of it within 20 years, while up to 65% of men with untreated Gleason 7 cancer will die of it 20 years. The numbers are a little dodgy because the 20 year study started ata time when the criteria for Gleason scoring were different. Hence the study said 23% of untreated Gleason 6 patients, but today, many of thosepatients might be called Gleason 7, so the real number could conceivably beas low as 10%.Of course if you're really young, and otherwise

have expectations of goodlongevity, you need to think more than 20 years out. I think that by 25or 30 years, the situation looks very grim, even for Gleason 6 cancers, and looks really deadly for Gleason 7 and above.Unfortunately, in addition to the statistical uncertainties based on diseasecharacteristics, we also have the crap shoot character of treatment. Somemen are seriously injured by treatment. Some are not. Some are badlytreated leading to unnecessary failure and death. Some are not. The worstof all worlds is to go through a treatment with severe side effects and then find out that it didn't work and you're back at square one except thatnow you're impotent, incontinent, and in pain.Here are some steps to take when considering treatment:1. If it looks at all like active surveillance is possible, get a secondopinion on the biopsy. The Gleason score is all important.2. If it

looks like treatment is the best option, get second and moreopinions about what treatment to get and where to get it. You only getone shot and you don't want the local con artist to con you into a surgeryor radiation treatment that he's only marginally skilled at doing anddoes sloppily in order to hurry off to his lunch date or golf game.3. Get the best advice you can get, educate yourself as best you can,make the most informed choice you can, and then accept that you did yourbest. It might work out great. It might not. But there's no futurein beating yourself up about it.Alan

June 10, 2011