PC: GUIDELINES for who needs treatment, who does not.

Thanks for your thoughtful comments and contribution, Dan0. I hope to get back online tomorrow to address your inputs...is long as the venom remains in-check and the moderators don't have to shut this down while I'm gone. Thanks for being clear and specific in your feedback.

As a newcomer to PCa and HW, I like this thread. I don't find it overwhelming at all. In fact, I find it informative and interesting. I don’t have the history with the contributors that many have, so I suppose the contentious tone in some of the responses might have roots in previous threads. I like a heated debate so it doesn’t bother me at all.
I think AS has a place in the treatment protocol provided those diagnosed as low risk on biopsy have other tests to confirm with reasonable certainty that their disease is indeed low risk. Today, that’s probably with mpMRI and maybe some of the newer lab tests which look at cancer cells to differentiate between aggressive cancer cells and not so aggressive.
I had lots of folks here tell me initially that I have low risk cancer and I should consider AS. It was reassuring at the time, and said with the best of intentions, but now I know it was premature. That is not to say that I’m not low risk and a candidate for AS. I may be. But without further tests, I simply do not know, and neither does anyone on the forum. My results are preliminary. Based on what I know today as seen in my signature, I might be borderline low risk. Age, PSA, PSA velocity, PSA density, and Free PSA are not favorable. All I really have going for me are very small amount of cancer found and Gleason 6. My mpMRI on Thursday I hope will tell me more.
If by some stoke of good luck I don’t find evidence of more cancer, higher Gleason, spread to SV, or EPE, I still plan to have proton treatment in January. Why wouldn’t I consider AS, some might ask? For two primary reasons: First, for many, AS is a temporary delay. about half eventually progress and have treatment in a few years. With my borderline status, I doubt I’d make it more than a year before one or more of my variables worsened and I was no longer acceptable for AS. Reason two, and few will agree; if proton therapy wasn’t available, I would probably try AS for as long as possible to avoid the terrible side effects I read about every day on this forum. I’m convinced that proton therapy offers at least an equal chance for cure, and a strong probability that I will avoid incontinence and ED. Without the option of proton therapy, I’d put this off as long as possible. I’m not trying to promote proton therapy. This thread is about who needs treatment and who does not, not which treatment. I only mention proton therapy to explain why I wouldn’t try AS.

Hrpuf,

No problem with your reply or your opinion, its as good and valuable as the next person's opinion.

But what if you are ultra low risk, and what if AS would always work for you? Would you still want to have treatment knowing that you might have a 50% chance of never needing treatment. Even proton has it's risks.

And the advantage of AS, if you ultimately need future treatment, and that's a big if, you will probably have the exact same options then, then you currently have now.

Not trying to change your mind. Just an honest question.

David

Hrpufnstuf,

First of all, I really like you moniker.  I also really like your sensible, grounded, common sense approach to your situation.  Very smart.

I think it reflects what the majority of guys on the forum feel to be wise.  Tht is, for those for whom it's an option, be sure to consider AS as a possible course of action, but always listen more to the medical experts with whom you're working than to a bunch of amateurs selectively reading various studies and papers who seem to say that if you're smart, here's what you "must" do.  The doctors know more about your total situation than can ever be reflected in a "signature" here on HW, and we don't have access to your complete medical history or your personal life situation.

It's your body, your life, your choice.  Do the smart thing.  Make a personal decision.  Never second guess yourself.  Good luck to you.

 

Dallas:

With all due respect, I think we ALL consider QOL. That is an important component.

Mel

Well, I think when txs. are discussed by the medicos, they do discuss the SE in detail. At least that has been my experience. But, then again, I did seek advice from some of the best practitioners.

Based on what I can glean from the HW posts, our folks are well aware of the possible QOL issues. Of course, it's one thing to be aware and another to experience it.

Also, the folks on HW are already some of the most knowledgeable patients. I'm sure there are many patients who are not that bright or inquisitive or computer literate and perhaps their doctors do not provide good information about the various tx. possibilities and related issues.

The PSA issue has been kicked around ad infinitum. In a nutshell: you are preaching to the choir.

If the opponents of PSA testing have their way, in 10-15 years we may have a huge number of folks dx. initially with very late stage PC, already symptomatic. However, if I had to bet, I would guess that they will improve the testing so that we can discard the PSA and use a newer test. There are some out there already

Mel

John:

How could that be? My own family doctor no longer routinely does PSA testing for his patients. Sadly, he has bought into this. I guess his family practice organization now has adapted that as policy. There are about 6 doctors in the practice and they are all probably not doing PSA testing.

This is one local office, but I have to believe most family practice doctors get the same newsletter/policy letter. No?

Mel

Thanks, again, everyone for your continued interest, and especially to those who gave well-reasoned responses which will ultimately help others .   [I may use this passage in a book targeted for men with favorable-risk PC cases and their loved ones, and I find the iterative vetting process to be valuable in tuning the message.   As alluded to previously, most the “attention” (you can substitute the word “funding”) goes to the high-risk and intermediate-risk cases.   This effort, on the other hand and in my opinion , may benefit the larger, underserved set of low-risk men by helping lift the unnecessary clouds of confusion and misinformation which persist mostly from outdated perceptions which are not based in current science and outcomes.]           Dan0 sent some great comments, which I appreciate.   First, he commented about the opening statement, “1-The men and women at HealingWell are not medical professionals” by stating, “ That is not true of everyone .”   Point well taken.   I am not a medical professional, yet it seems to be a self-anointed HW badge of honor to tell someone else that they “are not a medical professional.”   Some of us may or may not know more about PC than your run-of-the-mill medical professionals (a point I am not raising for debate here), but the point I sought to make that none of the recognized world’s experts are posting openly here at HW.   I will change the opening to focus on “expert” not “professional.”     There is an obvious (I believe it’s obvious to the casual observer) linkage of the first sentence to the second sentence which conveys that even though member contributors here at HW are not the world’s experts on prostate cancer, we DO know who those experts are, and we CAN benefit newcomers by offering insight into their positions, results, editorials, etc.   Perhaps this is made more obvious by suggesting that the opposite—suppressing, hiding or obscuring the insights of the world’s PC experts—would somehow benefit newcomers…that’s ludicrous.   I have no problem calling out the world’s PC experts:    Scardino, Carroll, Scholz, Klotz, Myers, Eastham, Klein, Carter, Han, Partin, Oppenheimer, Moyad, Hussain, Zeitman, Cooperberg, Thompson, Zelefsky, Kwon, Mulhall, Chodak.   The list does go on.   In this thread I previously called out the credentials of Scardino, Carroll and Scholz as being among the best-of-the-best;   and I would say that goes unchallenged.   And is anyone, by the way, challenging the NCCN Guidelines as anything less than from the experts themselves?   No?   Good.   So, I will continue to present the opportunity for newcomers to learn from the very best.   Don’t take my word, take it directly from the world’s PC experts.   The second sentence remains unchanged.   Dan0 also commented about the definition of overtreatment I used in sentence 12.   There are numerous definitions.   Suggest a different one. Intertwined in that comment by Dan0 was a question about whether the “majority” of favorable risk men do choose “immediate treatment.”   I do call 80% a “majority.”   THIS Harvard report (and please do absorb the entire article) says it’s actually 90%, which might be a “super-majority,” but I’ll stick with “majority.” Another comment/question followed about G6 cases, but I would again clarify that the risk profile consists of multiple dimensions; Gleason score is only one. Lastly, we again see Dan0 raising the question, “Should we (you) tell them their disease is indolent?”   This, it should be obvious, is why I numbered my original sentences.   None of the sentences I wrote say what you implied.   You appear to have pulled in hyperbole and exaggeration to make a point which I entirely agree with.   Same with telling them “they are not being rational.”   There is no such assertion made on MY part; but I find it highly appropriate to bring into the discussion some of the clinical experiences that the world’s PC experts openly have shared with us on their observations and musings of men in similar situations to HW members and newcomers.   I find listening to the real experts to be value-added.       compiler’s big objection was about my second substantial post:    “medved added a comment about men “electing” to be overtreated (compiler also made a similar comment later).”   His comment was similar.   Minor point, but I could tweak the wording since this was deemed to be the significant issue to raise.           clocknut made a comment which I can very easily clear-up immediately.   Nothing, in fact absolutely nothing, in what I (as an “ amateur ”) have posted implies to newcomers “ here's what you ‘must’ do ” {these italicized quotes taken directly from clocknut’s most recent post}.   Replies like this are so heavily burdened with exaggeration and hyperbole that replying to them is nearly impossible…but I will attempt it:   By “ amateur ” you have really done no more than correctly repeat the point made in the very first sentence in my original posting.   I, for one, am not a medical professional or a world renouned PC expert.   This is a fact that does not need to repeat at every corner; once in clear and unambiguous terms is enough.   If, on the other hand, your name-calling is a attempt at an insult…all I can say is “go ahead”…but don’t expect me to take the bait and lower myself to that level.   I don’t find that to be necessary.     DallasDave wrote:   “I'm concerned about the stuff coming from the "experts" and getting disseminated to the general public.”   DallasDave, I’m concerned about the stuff coming from the experts NOT getting disseminated widely enough, and quick enough, to the newcomers who end up having favorable-risk PC.   Again, please do recognize the very few of my own personal (non-expert) words I have used to give guidance, and the numerous references I have made to those who ARE the recognized experts.   Your other comments about the PSA test, DallasDave, are important, but not directly tied to THIS thread on PC overtreatment awareness.   This is not a thread about PSA testing/screening.     Overall, the key theme   in the most recent replies seemed to focus on the “expert” opinions, and most particularly whether (a)   I was somehow lumping myself in with the “experts” I quoted, or (b) the quotes/references I made were attributed to ME instead of the “experts.”   I think it’s clear who the experts are and are not.   Most of of these type of comments were entirely unspecific (without reference to any specific line number), and so I took most of them to be simply an exaggeration/hyperbole to make a point.   Anyone got anything in SPECIFIC with what I have written in the original post that they have issue with in this regard…or is it in general that you really don’t want to know what the experts are saying?  Cuz, other than links to vacation photos, these pages are filled with requests and responses to what the experts are saying...just mostly NOT about favorable-risk cases, the most under-served set of men with this disease.       Post Edited (JackH) : 8/20/2014 3:35:08 PM (GMT-6)

Sure. Although I already have. First however please read the Harvard link I provided in my previous post. While the experts recognize that the majority of low risk prostate cancer patients move to immediate aggressive treatment, it is my very own personal belief that low risk men are the most underserved, under-represented population. I think I already said all this.

Mel,
From a post on PCAF.

The current study found that even though the US Preventive Services Task Force recommended in 2008 to limit screening in older men with fewer than 10 years of RLE and stop screening altogether for those aged 74 years and older, screening rates did not significantly differ between 2005 and 2010."

"The most frequently screened men were the healthiest men: those aged 65 years to 74 years who had less than a 27% chance of dying within the next 9 years. Approximately 58% of this group was screened in 2005 and 56% was screened in 2010. Of the men aged 75 years and older who had a 76% or higher likelihood of 9-year mortality, 36% underwent PSA screening in 2005 and 34% were screened in 2010."

"'Prostate cancer screening for many patients and clinicians has become habituated. They need to be made aware of changes in guidelines and the importance of individualizing the screening decision.' The article in the attached file also notes that there are validated decision aids available from the ACS and other organizations, but says they are rarely used."

Jack:

Not sure what you meant about the vacation photos remark.
HW serves us in many ways, and once in a while it provides a respite from all things cancer.

I consider my objections to be important. You can call it a request for a minor change in wording. Saying that people request (choose) overtreatment is an insult.

You still have not been forthcoming regarding your agenda. So, now we see you plan to write a book? Are you affiliated with some organization?

Frankly, your evasion of this question doesn't pass my smell test.

Just a few minor words might change all that

Mel