What is mainstream?

In another post, someone said that Dr. Myers is somewhat out of the mainstream. Yet, he seems to be a recognized expert, along with Scholz/Lam, liebowitz, Hussein, Strum, Sartor, etc. I've probably missed 10 other names.

Well, given that as I understand it there are maybe 100 medical oncologists specializing exclusively in PC, what the heck is the mainstream?

I honestly don't know any more. There ar certainly debates on WW/AS vs, treatments, when to start SRT if surgery fails, when to start HT, what type of HT and for how long, etc.

I no longer believe there is specific conventional wisdom on these topics.

Am I missing something?

Mel

Also in any group of doctors you will find that some are well short of the mainstream, other in the mainstream and a few others consistantly ahead of the mainstream. I would classify some of the doctors you mentioned as being consistantly ahead of the mainstream.

Slavish adherence to NCCN is mainstream and "safe," for the doctor at least. In my opinion, NCCN is for beginners. The real pros go beyond NCCN and let their clinical experience and reasoning powers forge new paths that eventually find their way into the NCCN.

Nellie

Mel,
The poster's intent might have been to downgrade Dr. Myers. I say this because he mentioned the fact that Dr. Myers doesn't accept insurance payment (which happens to be the case with many physicians and organizations these days) and the fact that he is not "mainstream".

One would have to ask that poster for his definition of "mainstream".
My guess would be that Dr. Myers adheres as much as he can to evidence based medicine, but he does think outside the box and examples of this are his use of ADT3, diet and other therapies such as Leukine, Ketoconazole, E2 patches etc. in an effort to slow down disease and improve the patient's QOL. Doing this doesn't qualify him to be mainstream...Like JohnT said he happens to be ahead of the mainstream.

RalphV

Zufus:

Actually, it's Dr. Lam who suggested to do just the avodart. Please get your experts straight!

LOL

Mel

I was that poster. First, contrary to Ralph's suggestion, it was not my intention to "downgrade" Dr. Myers by stating that he does not accept insurance. That is simply, as I understand it, a fact. It does mean that many people would be unable to see him because of an inability to pay (unless he sees patients who are unable to pay on a pro bono basis; I do not know whether he does that or not). In any event, as far as I am concerned, Dr. Myers is free to charge whatever he wants, and to accept or not accept insurance. So it is not a criticism. But it is certainly worth knowing if one is considering him.

Second, there is probably no single definition of a "mainstream expert." I personally regard a "mainstream expert" as one who (1) practices evidence-based medicine; (2) publishes relevant and up to date research-based articles in reputable peer-reviewed journals, (3) takes the NCCN guidelines into account in making treatment recommendations, deviating from those recommendations only when there exists some reasonable medical evidence to support doing so, and (4) makes treatment recommendations and decisions in a way that is not materially inconsistent with the consensus views of the most well-regarded experts in the field who practice evidence based medicine, where such consensus views exist.

If someone wants to disagree with my view of what it means to be a "mainstream expert," that is fine. This is only my view.

As I said in my initial post, some people will think that it is good to be a mainstream expert. Someone else may think it is bad to be a mainstream expert. There is no single "right answer." Some will say the "mainstream" guys are slavishly adhering to outdated guidelines and refuse to get ahead of the curve. Others will say the non-mainstream guys are using treatments that lack a sufficient evidentiary basis and possibly doing more harm than good. I have a personal bias in favor of docs at leading institutions -- places like Mayo, Hopkins, MSKCC, Dana Farber, MD Andersen, UCSF, Cleveland Clinic, etc. But I would not criticize anyone who had a different bias. And I certainly think the approach someone like Mel is taking -- seeing both an expert at a leading institution and an "independent guy" -- is rational.

So there's the boring old mainstream.

There's also the leading edge - and the bleeding edge - and the lunatic fringe.

The latter 3 are not labeled. Their salesmen claim that each is the leading edge.

Try back in 15 years to see which one you picked. That, IMHO, is the problem with pursuing the leading edge - the miraculous qualities "as yet unproven to mainstream science" of Eunectes murinus lipid extract turn out to be snake oil most of the time. And then they start up with Crotalus atrox hydrophobic essence... Sorting reality from fables is not all that simple, since even someone who means well and speaks persuasively and believes what he's saying can be barking up the wrong tree - and is just about as useful to those that need something that works now as an outright huckster if he is.

Mind you, the mainstream gets it wrong often enough. I felt totally vindicated when trans fats turned "bad" - the mainstream medical community had been trying to get people ("for their health") to eat more margarine, which was trans-fat city before any of us knew what a trans fat was, and I'd long since gone to butter - not for some pseudo-scientific or leading edge trans-fat awareness, simply because if I was going to be eating fat, I figured it might as well be the fat that tasted good (if perhaps in a slightly smaller portion), not the horrid stuff that margarine was (it has improved in taste, at least among the trans-fat-free "spreads" now on the market.)

One man's "art" is another person's word for "lucky guess".

Just because a handful of people may or may not had indications of a PSA or cancer progression slow down by goingon, as it was put, "weird diets', is hardly evidence that it the cause of such good fortune, and certainly isn't vaguley scientific proof that it is worthy to follow. I think sometimes, desperate people go for desperate steps, whether they are well founded or not.

david in sc

p.s. reasoning: you have many that do all these "out of the box things", take multitudes of supplements and vitamins, make radical diet changes, and yet none of that even remotely changes their cancer outcomes. I say, show me hard facts that can't be disputed, then I might be convinced.

David -- the proof you require won't happen in our lifetimes.  sometimes a leap of faith is required.  i don't see taking a few pills and eating better as a hardship.  in fact taking care of myself makes me feel better.  but to each ther own.

ed

 

Don't think complier is looking for alternative medicine, diets or supplements. He asked some very good questions like when to start SRT if surgery fails, when to start HT, what type of HT and for how long, etc. If the experts cannot agree, what, who and how are we going to choose?

Outside of major universities and research centers, there are few oncologists who are really experts in PCa. Those are the ones that desperately need the NCCN and its mainstream hand-holding. I've gone to several. They were specialists in blood-borne cancer, or breast cancer or you name it. But they know little about prostate cancer. So when you or I walk in the door, they need to have a reliable, quick reference that they can have confidence in and feel safe. The NCCN admirably fulfills that role.

But real expert medical oncologists who have dealt with thousands of PCa cases have built up a knowledge base that goes far beyond NCCN. They have had to deal with the hard cases and the oddball cases. They have had to try many approaches when the NCCN recommendations fail. They firmly believe in evidence-based medicine, but also know that clinical evidence is valid and essential so long as clinical trials have not been completed or even started.

Folks like Dr. Myers, an expert in pharmacology, can use that knowledge to seek better combinations of drugs when other approaches fail. Other experts have their own area of expertise that aid them in providing help where no there is no guidance. I seek this kind of expertise for my condition: oncologists firmly grounded in the mainstream, but able to extrapolate treatments based on their extensive knowledge.

Nellie

Let's stay on the subject, and not start questioning each other's treatment choices -

compiler said...


I honestly don't know any more. There ar certainly debates on WW/AS vs, treatments, when to start SRT if surgery fails, when to start HT, what type of HT and for how long, etc.

I no longer believe there is specific conventional wisdom on these topics.

Am I missing something?

Mel

Mel,

You are not missing anything IMHO. Often I don't know what to believe either. But I admire your decision to keep your mind open, and your determination to try to find an answer by consulting specialists in the field.

Good look in your adventure

San Carlos