Fw: Active surveillance now acceptable - who knew?

[Guest guest]

I'm hearing the same things you are i.e. that it's not considered a viable option. But, I think that has a lot to do with whom you come into contact with when you are first Dx. Meeting with a Urologist will almost always assure that the first and only option should be surgery and as quickly as possible. Same for Radiation Oncologists with their favoured method of treatment. Medical Oncologists may be giving some different advice but I do not believe that active surveilance is one of the choices. They may advise for the more esoteric patients seeds, cryotherapy or even HIFU. Dealerships that sell BMW's do not tell their customers how good they would look behind the wheel of a Volkswagon.

However, I do believe that the pressure is building and will continue to build as the baby boomer generation becomes the main patient population. The first baby boomers are turning 65 this year as they are men born between the years 1946 and 1961. This is going to constitute a generational shift not only in the population but in the thinking that is coming with that population. Men of this generation are overall computer savvy whereas most of the WWII generation with PCa missed out and did not get the benefit of the internet and were least likely to question their doctors orders, treatment options, or go outside the sphere of the hospital that was treating them for support or information. The baby boomer generation is going to be quite different in my opinion and rather than obey orders, they are going to be making demands. Initially those demands

may appear unreasonable but that is because I believe that such demands have never been made of the medical profession and research communities before. The average baby boomer despite their educations , experience and confidence with computers , knows little yet of PCa or the details of it's treatment. Within 4 years the majority of men being Dx will be coming from that generation and I bet dollars to doughnuts that you are going to hear a lot more publicly about PCa. In fact, I think you can count on it. It's going to come front and center and be discussed openly. The polite euphamisms surrounding treatment today you won't be hearing much about any longer. Mostly because until quite recently it was next to impossible to discuss any kind of medical treatment that related to either male or female sexual organs in a public forum outside of internet support groups. That has all changed dramatically within the

past 5 years and I expect it to become even more open as time goes on. I believe that discussions that men and their wives may have been hesitant to discuss even on a semi-private board such as this will be discussed openly on television in the not too distant future. It will I believe push the envelope on the discussion of treatments, research and side effects. I also personally believe that it's healthy and needs to be discussed and discussed openly without embaressment or shame. I think that one of the greatest hurdles we have to surrmount is that most men don't really want to talk openly and publicly regarding treatment outcomes that did not go as doctors told patients to expect. I think we have already come a long way from the cloistered hospital environment and small patient support groups moderated and run by hospitals to the open international experience of the internet. Who would have dreamed 10 years ago that

PCa patients from all corners of the planet would be connecting on the internet and discussing prostate cancer with one another? It's really amazing when you contemplate it . But we now take this for granted. Which is why I believe that in very short order the discussion will expand beyond the internet into a wider public forum. I think that this is exciting because it will be the impetus we need to drive the research and drive for better treatment options that are so desperately needed.

What I think is happening as far as AS is concerned is that some men who opted out of treatment 10 and 15 years ago for whatever reasons are still around today and that does not fit the medical picture that we have been led to believe would be the outcome. In fact such outcomes were considered impossible. Not to mention that a lot of men fell through the cracks as their doctors refused to keep them as patients if they refused treatment. Which meant that no one was tracking them at all until they reached retirement age and became eligable for Medicare. There is some recognition that these men exist and it makes sense because even today the facts surrounding PCa are not really known so all physicians have really is a guide. Well, if everyone goes into treatment then there will be no patient population that went untreated and you would therefore not know if the projected outcomes of patients

would have come true or not. I think that there are now a sufficient population of patients who have forgone treatment that there is some realization in the medical profession that it is not as cut and dry as they have been projecting. Considering also that the cures have not really been cures in the sense that we normally think of cures, and the morbid side effects of treatment become more generally known, an AS strategy for men will low risk PCa looks a lot more appealing. The big question of course being that we have still not been able to discern with any degree of certainty which patients will go on to develop aggressive PCa and which men will continue for a decade or longer with a much more beneign and slow growing (indolent) form of the disease. Or more importantly, why do some men remain low risk and why do others develop aggressive disease?

BOB

Subject: Active surveillance now acceptable - who knew?To: ProstateCancerSupport , newdx@..., "'ww'" Date: Thursday, June 9, 2011, 10:33 PM

There is a long piece in Medscape titled Active Surveillance for Low-risk Prostate Cancer at http://www.medscape.com/viewarticle/743233 which, I think, should be required reading for urologists as well as all men of all ages diagnosed with what is referred to as “..low-risk localized prostate cancer…â€

I’m not too sure that I agree with everything in the piece. For example the opening sentence is:

<snip>Active surveillance is now an accepted management strategy for men with low-risk localized prostate cancer, in recognition of the knowledge that the majority of men with such cancers are likely to die from other causes. <snip>

Is it really an accepted management strategy? Are newly diagnosed men told that this is one of their options? Maybe in some cases, but I am still getting mail from men with ‘low-risk localized prostate cancer’ who have been told that surgery is their only option and the sooner the better. Men with ‘low-risk localized prostate cancer’ tell their stories on the Yana site with no mention of being told about AS (Active Surveillance) as an option let lone that it is an accepted management strategy.

After all these years when Watchful Waiting and AS (Active Surveillance) were subjects which attracted attacks and abuse when trying to discuss them as logical choices for SOME – not ALL men – it warms the cockles of my heart to read a paragraph like this one:

<SNIP> Prostate cancer screening using digital rectal examination (DRE), PSA testing and biopsy leads to the detection of disease that is not clinically significant in many patients, meaning that if untreated the cancer would not pose a threat to health or cause death. Treating men with clinically insignificant tumors involves the risk of unnecessary morbidity. Hence, AS seems to be a solution to the widely acknowledged problems of overdiagnosis and overtreatment that inevitably accompany the early detection of prostate cancer. Furthermore, prostate cancer has a long lead-time before it becomes clinically apparent. As such, AS is an excellent way of buying time until the aggressiveness of disease in any particular patient can be identified, reserving radical treatment for those in whom it is necessary. <SNIP>

And this one:

<SNIP> In summary, AS for favorable-risk prostate cancer is feasible and seems safe according to the 10–15 years of available data. AS provides an individualized approach to low-risk prostate cancer based on the demonstrated risk of clinical or biochemical progression over time; large series of AS have revealed that the likelihood of dying as a result of causes other than prostate cancer is far greater than disease-specific death. Uncertainty remains regarding the long-term impact of delayed treatment in men reclassified as higher risk after a period of observation and repeat biopsy. Results from prospective, randomized trials comparing AS to radical treatment and larger cohort studies are required, and are currently underway. Men with favorable-risk disease should be offered AS as a possible treatment option, and educated

regarding the risks and benefits of this approach. <SNIP>

Couldn’t have put it better myself!! Yes, there is uncertainty associated with AS (Active Surveillance) but show me any other therapy where there is certainty. It simply doesn’t exist and more than certainty exists in or any other aspect of life. We each have a theoretical life span that has a range starting a few minutes or hours from now (heart attack, accident, natural disaster) to age 120 which at present represents the greatest possible age for anyone to live to. None of us has any real idea when, in that range we will pass on.

All the best

Prostate men need enlightening, not frightening

Terry Herbert - diagnosed in 1996 and still going strong

Read A Strange Place for unbiased information at http://www.yananow.org/StrangePlace/index.html