For all the talk of overtreatment, what are your suggestions to curb it? Part 1

Mike, your feelings about QOL are a very important consideration in evaluating any potential treatment. Never underestimate that factor. And as far as results, all one has to do, is review several dozen PC treatments even here at HW, and the term "roll the dice" really comes into play.

We are all over the spectrum when it comes to results and side effects, and while you may do things to help increase favorable results, i.e. getting the best surgeon or best RO, that will not guarantee any particular result.

So for a verified G6 guy, I would recommend that one thinks long and hard about even being treated immediately, especially if one meets the proper criteria for AS. With AS, if one's circumstances change or if their cancer shows signs of progression, then all the invasive treatment methods generally would be on the table. In the meantime, you can hold onto some semblance of normal quality of life.

I wonder if some of the men with G6's, in their heart of heart, feel it really was worth "getting it out", if they are still consumed with serious incontinence and/or ED issues. Not judging anyone's decision, talking about the risks that come with prostate cancer treatments in general.

No easy answer, no easy solutions, no sure thing - which makes all this discussion even more complex.

david in sc
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P.s. guys and gals, very happy how this thread has developed, since it was unlocked, its been filled with so many good thoughts and ideas, on page 7 and still growing, never expected that. its all good

Would anyone have radiation without their uro giving his or her OK? My point was the uros have seen all these men at all stages, and they see what has happened to them over time. Do so many of them really recommend treatment when they know it's probably not necessary?

Phenom,

I think you're onto something. I wouldn't go quite that far as to say all GS6s should be on AS, especially if one is African-American or has first-degree family members who died of PC, or if there is some reason to suspect rapidly progressing disease.

You may be interested in the discussion at the thread:
www.healingwell.com/community/default.aspx?f=35&m=2744274

It speaks to a way to help determine if GS6s and 7s are likely to progress. Right now, GS6 in a low risk man is acknowledged by NCCN and others as a good candidate for AS. However, while about three-quarters of men are diagnosed with PC are diagnosed with GS6, only about 10% of all diagnosed men go on AS, and 90% are immediately radically treated. IMHO, those numbers should probably be reversed.

Then the question arises as to when a man should come off of AS, which is where the TMPRSS2:ERG fusion and other genetic tests may turn out to be useful.

I don't think anyone suggested that 100% of G6 men should be on AS. G6 men that meet the fullest criteria for being on AS, should be on AS, before anyone pays for invasive treatments that may never be needed. Big difference there in the thinking. Still has to be evaluated on a case by case basis, not some blanket statement. There may be mitigating situations from guy to guy that should ultimately determine if immediate treatment is needed or not. I don't know why anyone wouldn't think this would be both a wise and safe methodology to the issue.

david in sc

davidg: not sure about the blanket statement issues above, I am staying out the great "studies" debate, not versed well enough in those. Plus, the real purpose of this thread was suppose to be about practical solutions, doable fixes for true overtreatment.

You said you wouldn't be for AS if you were G6 and qualified. Let me play devils advocate, what if you had to be on AS if your situation didn't warrant treatment? What if that is how the 'industry' ultimately decided to curb overtreatment of indolent cases? Just saying, what if?

david in sc

Given that some G6's seem to end up G7's after surgery, I reject the idea that a G6 patient would HAVE TO accept AS.

Perhaps, as they develop better predictive techniques, this could then be a reality (or, forget the requirement, more patients would willingly do AS).

Mel

mel, it was strictly a "what if" question. and davidg, these questions aren't always need to be answered in light of a 40 year old, it was meant to be more generic, in that if the system changes one day, and AS was considered the future standard of care of G6 case. I don't see that happening any time soon, but it could evolve to that in the future. I should add, personally, we still need better diagnostic tools, to separate the indolent from the aggressive, and I think for the safety of the patient, a 2nd biopsy opinion should be required before any treatment, including the use of AS is initiated, sort of a safety net.

david in sc

Of course age is a determining factor. But I feel that factor should be the same if you were 40 like you when dx, and me at 56 when I was dx. I was considered young by my urologist, said I was one of his youngest PC guys, and he's been practicing for nearly 30 years. I don't think most guys in their early 50's would want to be written off by the system, now or in the future, any more than the guys in their 40's. Hope you see my point.

I think I can conclude, and not putting words in your mouth, that overall, you aren't real keen on AS being widely promoted and utilized. I, on the other hand, perhaps tempered by the fact that my PC treatments were not only invasive, but down right destructive, leaving me disabled, feel that AS should be used and promoted to all those that can be safely on it.

With most medical maladies, not talking about PC now, in general, you don't start out treating a patient with the most invasive "cure" first. You do other things, less invasive, and if they don't work, then you move toward the most invasive treatments.

david in sc

David, a couple of things, I'm very keen on people picking the form of treatment or disease management that they and their docs think is best for them. You won't see me criticizing individual choices or patronizing people for those choices. If AS was good for my grandpa (i was really close to him) and if BT is what I would hope for my dad (June biopsy), I think we can safely say I'm okay with whatever best suits the individual and his informed choices. And regarding age, yes, I'd put 50s in with my group but that is obviously strictly my personal opinion. My dad would be 68 at the time of treatment and in my personal opinion (completely uneducated) surgery can be tough at that age.

I was talking about the guy who tested my PSA.

I really don't care what the USPSTF thinks. One I saw what they tried to do with BC, two, Otis Brawley himself told me in writing (saved email) that guys my age were not even part of the equation when they reached their decision back in 2012.

I should do AS because the USPSTF or you think it's best for me?

and women will slaughter them. I know it's coming up, linked the NY Times article about weeks ago.

I think it's going to be tough to have urologists follow the aua guidelines and even tougher to curb mammograms. My sister had one a week ago and discussed what's going on with her doc and she said she'd ignore it. I see it it as an uphill battle bound to be lost but of course I'm probably wrong.

Tall Allen said...

You may be interested in the discussion at the thread:
www.healingwell.com/community/default.aspx?f=35&m=2744274

For those of you who didn't follow this link when Tall posted it above, here's another chance.

I am convinced of the problem of over-treatment and, at the same time, my personal experience with the disease makes me very leery of recommending AS for anyone except the most perfect, textbook candidates. Of my four biopsies (about 60 cores, total) I had one that was positive. (On my third biopsy -- my fourth was negative.) That one positive core was very low volume. Initially scored Gleason 6(3+3) and 3-4%. I got a second set of slides made from that biopsy and had another pathologist look at them. That second opinion found cancer only in the same core. It edged it up to Gleason 7(3+4) but concurred with the 3-4% part. Both pathologists commented that there was so little cancer present they almost missed it. At 59 years old with a very-low volume GS7 diagnosis many AS programs would have considered me a good candidate.

But I chose surgery and my post-op pathology report showed a large, growing Gleason 9(4+5) tumor that had escaped the prostate and, in a few places, the surgical margin. Currently, with ART and ADT I have a good chance for a durable remission (doctors don't like to use the word 'cure' with GS9s.) If I had waited much longer that chance of a remission would be much reduced.

So I want to recommend AS since it would allow many, many men to avoid the side effects of treatment, but on the other hand, I am easily spooked by any deviation from 'pure' GS6(3+3).

What is discussed in the link above is preliminary research that might lead to a test that can be applied to Gleason Pattern 3 tumor samples. The test might be able to distinguish between cancers likely to progress and cancers that will probably be indolent.

This is exciting for two reasons. It would provide a means by which some Gleason 7 men could be taken off AS because their risk was higher than average for Gleason 7. This excites Tall and Casey but me not so much. The other thing -- and the thing that does excite me -- is that it would allow you to identify a population of Gleason 6(3+3) men for whom AS would be even safer -- so safe, in fact, that even I could steer them towards AS without being nervous about giving out advice that I would be glad I hadn't taken myself.