This article is why the American Cancer Society will never get another dime from me in my lifetime

I agree with the calmer heads part. True statement. But I certainly will comment peacefully...

ACS will be positioning themselves away from any mass screening. Most people diagnosed with prostate cancer have no known risk factors. I apologize for not using the term "mass or population based screening". But ACS did announce they do not advocate it. The at risk people will be those who do not know the risk factors they carry.

My point about patients not being made aware of treatment ramifications was not to be interpreted that the ACS is advocating NOT making patients aware. My point was that ACS should spend more time educating people on what to do after a diagnosis through screening. I believe that cutting back on screening will also cut back on education. Screening events are quite educational to the public and this step clearly will put an end to such events sponsored through the ACS. If only those to be screened are high risk, which the ACS still supports, then how will they replace these events educational value?

Again the ACS is announcing that they will be issuing new guidelines about screening. So throw those old documents away like ACS Guidelines for the Early Detection of Cancer. The new ones are coming...

On the more harm than good part. Go back and read why they are changing their guidelines. You are right. You might have missed it.

Tony

Casey, I think it would better served to agree to disagree. And no, I am not hysterical about the subject, just incensed. Being now a 4x cancer survivor, I was always one of the ACS biggest patient advocate, no more. The Prostate Cancer world and its population are not getting a fair shake. The rest of it is too political to me. For me, its about every individual life, and that life being precious and worth saving.

David in SC

Thanks for the discussion, guys.   OK, Tony, you challenged me to go back and look for an ACS statement on PC screening resulting in more harm than good .   I did.   I actually did a search on the ACS site.   I didn’t find anywhere where the ACS said PC screening results in more harm than good …I think this is what you were implying, isn’t it??   Help me out by including a link (maybe it's really there, and I just missed it).   What I did find was two things:   (1)   An ACS article titled:   “ Prostate Cancer Prevention: The Scoop on Supplements ” where they wrote that “ researchers halted the trial after early analysis showed the supplements [selenium and vitamin E] weren't working, and in fact, in some cases, may have been doing more harm than good .”   They used that phrase, but that wasn’t what you were talking about .  This was the only PC-related use of that phrase I could find.   (2)   So, I did a search outside of the ACS site on “ more harm than good ” and “prostate cancer”.   I found lots and lots of article headlines with this catchy, scary phrase.   I have previously written on this board (a week or more ago) about my distaste for the media trying to scare people with PC using catchy headlines.   I read about two dozen of the searched articles with this headline, many of which quoted ACS in the body, but none of them quoted ACS saying what you implied that they said; that PC screening results in more harm than good .   It’s a phrase ("more harm than good") that gets around, though (as evidenced in the several dozed article headlines ), and it is catchy.   Maybe you saw the phrase in the recent Prostate Cancer Prevention Trial report, buried in one of the recommendations (note, in particular, the wording in recommendation #2) which served as a call to action for early detection and prevention :   1.                  Develop tests to distinguish between cancers that are lethal and those that are low-risk. 2.                  Reduce treatment for low-risk disease. Diagnosing cancers that don’t kill the patient has led to treatment that may do more harm than good . 3.                  Develop tools for physicians and patients to help them make informed decisions about prevention, screening, biopsy and treatment. Offer treatments individually tailored to a patient’s tumor. 4.                  Work to identify the people at highest risk for cancer and use proven preventive interventions. Some great points in these recommendations (which, I would point out, are not at all inconsistent with the ACS comments).   But, the context in recommendation #2 is totally different here…I don’t see how that catchy phrase could have gotten mixed up with the notion that ACS implies  PC screening results in more harm than good .   That phrase does have some legs, though.   My opinion.  I think ACS is onboard with the estimated 56,500 men who had serious cases of PC who's lives were saved by early screening between 1986 and 2005.  Some of those men are contributors on this board...perhaps you, perhaps me, perhaps both.  I think, however, that  ACS is trying to work toward reduction in the estimated 943,500 men who, during this same time period, were likely "overdiagnosed".    "The overdiagnosed patient is one not destined to experience symptoms or death from the cancer," the report author writes. "This means people who were never going to get a dangerous cancer get treated and suffer the ill effects of needless treatment. Overdiagnosed patients cannot benefit from treatment because there is nothing to be fixed, but they can be harmed."  This is from one of those catch articles with the headline:  " PSA Test: More Harm Than Good?"     In your follow-up post, however, Tony, I agree with your point on strictly using age.   I picked two ages out of the air for my hypothetical scenarios, but the decisions on testing should be more customized, individualized than strictly by age.   In PC screening, a man’s general health is probably more important than his age.   A man in his 50’s or 60’s who is in very poor health—with a cardiac condition or bad lungs— may not be appropriate to screen.   On the other hand, you might have a man who is 78 or 79, whose parents lived to be in their 90’s, and is in good health.   It might be appropriate to screen him.   It should be an individual decision made by the physician and the patient.   Another doctor from a different report (not ACS ) wrote "The average life expectancy for men over 75 years is less than 10 years, so screening them can do more harm than good ."   There’s that catchy, scary phrase again…   I would also agree, by the way, with the other writer(s) who suggested that more resources be given toward education on treatment options.  I think this goes hand-in-hand with the notion that ACS is trying to work toward reduction in the estimated 943,500 men who were likely "overdiagnosed".  My crystal ball is that we will see, in the upcoming days, more patients enlisting in AS programs as the science of diagnosis is refined with better tools for identifying low-risk vs. high-risk.  I hope we see that result.    

I say we get a group together down in Atlanta and picket the place.

Call out Brawley as a vainglorious, money-grubbing, death monger who promotes popular cancers to feed his cash machine, and who has no compassion for those of us who are suffering.

Get a few thousand suffering brothers who feel they'd be better off if their cancer were detected ought to get some news cameras rolling.

OBB

Casey, you have provided thought provoking counter points to Tony but, IMHO, you have found the trees but missed the forest.  By quoting and parsing the info from the ACS web site and Brawley you have provided what I assume is correct information but missed the fundamental difference in opinion between Tony (and me, and many others on this site) and Brawley/ACS.

What I would like to see is a definitive statement from the ACS that encourages routine PSA testing for prostate cancer.  That is not the message being sent by Brawley and ACS.  We can go on and on about not testing 85 year old men with both feet in the grave but that's not what we are talking about.  We are talking about the delivery of a broad message that men should be tested for prostate cancer.  That message is not being deliverd by Brawley and the ACS and I disagree with that stand. 

Organizations like ACS should know that their press releases carry a powerful message.  Their message could be "Men should be tested for prostate cancer".  They have chosen to deliver the message that causes confusion.  That is the point.

Tudpock

P.s.  BTW, I fully agree that there is overtreatment of PCa and that we need better ways of differentiating between indolent and aggressive cancer.  But, in the meantime, we need to diagnose so that men can make informed decisions.

Good discussion…and getting better.   This thread started with some wild accusations that seemed out of line with what was really being said, and for the most part those have calmed down.   Calmed down ‘for the most part’, but not completely; for example:   “ All the experts in the world do not know what advice to give us. ”…really(?) not sure where that comment came from; personally, I rely on inputs from experts as a decision-making input, and in reality I think most of you do, too.   Seems like a wild comment from left field.   The internet gives platform to wild statements, as we see, sadly, so often in politics (where is that birth certificate?) and chat forums…I’m fine with the freedom of speech; the sad part is the mob mentality in the uneducated, poorly thought-through responses meant to stir people up.  Too often people read the article headlines without actually reading and understanding the article.   Anyhow, back on topic…I go back to what I wrote in my first response in this thread, “ I found very little to disagree with in this article. ”   Those 8 bullets I listed…I agree with all of them, and despite some initial noise about them, apparently, at the end of the day, nobody else here disagrees with them either.   But there is still noise about ACS being “180 degrees” wrong.   I don’t work for ACS, nor am I one of the 3 million volunteers, but I think they’ve generally done good work, and done a lot of good for a lot of people ( far more good than harm).   I think that they need a 10 degree course correction with regard to PC, not 180 degree.; but just to be clear, I don’t 100.0% agree with their position on the firmness of starting men in the screening process.   I have an idea…maybe rather than counter-productively bashing, protesting, disparaging, etc an organization that we should be partnering with, maybe we could collaboratively develop a PC-centered “mission statement” to do the minor course correction in areas we all can agree on.   I’ll start with a few bullets (I’m just going to put moderate effort into wording; maybe someone can follow-up with improvements to my wording), then I’ll step aside…   1.        The ACS recognizes the strong benefits of early detection via PC screening tests.   The ACS does not advocate PSA testing for all men unconditionally, but with today’s technology does advocate early initiation of the screening process, coupled with smart decisions considering the man’s overall health on when to stop screening. 2.        The ACS promotes public funding for making PSA testing available to underserved members of the population.   Extend this statement to treatment? 3.        The ACS recognizes the shortcomings of the current PSA technology which has led to overtreatment of thousands of men for PC, and strongly advocates & supports research which will bring better diagnostic tools to the marketplace which will identify low-risk and high-risk cancers with more specificity. 4.        The ACS advocates treating PC that need to be treated, and through use of improved diagnostic tools not treating cancers that do not need to be treated. 5.        The ACS will work actively to improve education in both the medical and patient communities on which PCs need treatment and which do no, and also about PC treatment options and risks.   With better diagnostic tools to identify the existence of PCs that do not need treatment, the ACS supports more rigorous advocacy of Active Surveillance programs for a larger population of PC patients not needing treatment.   Not worded all that well, but all I’ve got time for now.   Do these seem like a good starting point for consensus?   I really don’t think this set would be considered 180 degrees out of phase with what the ACS today…do you??  I'm going to step aside now...

I'm truly sorry to hear that you had trouble finding helpful resources in that case.  I guess that by definition, "ultra rare" means that few knowledgable are available, making it tough to find.  With 1.5 million new cases of cancer diagnosed in the US each year, and the 150 different cancers that ACS provides focus on, they have a broad scope and would probably admit that it is beyond their resources to also address all of the "ultra rare" types.  It doesn't sound like they harmed you; they just weren't much help.  Do they do more good than harm, or more harm than good in your opinion?

Interesting to read the comments to the InfoLink blog on this subject. An Oncologist has just wrote what I believe is a very intelligent opinion on this action by the ACS...

prostatecancerinfolink.net/2009/10/21/acs-to-make-major-shift-in-cancer-screening-guidance/#comments

Tony

Casey, you state that, "Too often people read the article headlines without actually reading and understanding the article."  I certainly agree with that and, frankly, Ithink that is part of the problem with the comments from Brawley and the ACS. 

I would like the headline from the ACS to read "Men Should be Screened for Prostate Cancer."  That would yield a clear take away to the public and the details that you point out could be in the fine print (does not apply to death bed men over 90, etc.).  People would get the general message that testing is good.  Instead, the headline reads, "Advantages to Cancer Screening Exaggerated".  Unfortunately, that leaves another clear message that, IMO, is can lead to men believing that screening is not necessary because ACS says so.

The details you cite about the article are not untrue, it's just that only a few PCa wonks will read and understand them.  The general population will get a broad message that is negative about screening.

The people in management at the ACS are not amateurs.  They know how to deliver a message and, IMO, the message they are delivering is purposely one that does not encouraging screening.

So, you have been very articulate about parsing the ACS wording but let me ask you a direct question:  Do you believe, as Tony, myself and many others do, that a good broad message from the ACS should be "Men Should be Screened for Prostate Cancer"?  If you do we are all in the same boat and the details can come later; if you don't then, as David says, I guess we will just have to agree to disagree.

Tudpock

P.S.  BTW, what is your PCa story and why don't you post a signature?

My surgeon recommended that I see a radiation oncologist. He made this statement: "we would rather over-treat 100 patients than under-treat one patient". I certainly don't want to be the one.

jon

Let's see if there is something else we can all agree on...

What we'd like to see the medical community working aggressively on is (a) finding, identifying and treating the prostate cancers that need to be treated, while (b) not subjecting patients to needless "overtreatment" that occurs frequently with innocuous prostate cancers.

I think we are smart and capable enough to do two things at once. 

Lets be sure to have some continued effort focused on (a), which would also include improving the small percentage (1 out of 100, per cave88) who might be under-treated.  In the PSA-era, the focus has been almost exclusively in this area, although continued improvements are definitely possible.

At the same time, devote more resources to (b), which impacts a much larger percentage of men (94 out of 100, per statistics quoted below; 943,500 out of (943,500+56,500)).  This might not be your, but put yourselves into the shoes of the many new visitors to this site who fall into this category looking for guidance...

 

yep cave, looked like you just finished week 4 for you, about halfway. how many gys. is your total going to be?