According to a media release earlier today, in conjunction with the opening of the new football season in the US, the American Urological Association Foundation is collaborating with the National Football League to encourage men to “Know Your Stats about Prostate Cancer.”
Men and their loved ones can visit the Know Your Stats web site for information about prostate cancer and where to find free or low-cost individual testing locations.
As part of this September’s Prostate Cancer Awareness Month, 27 retired Hall of Fame football players recorded a public service announcement to urge men to get tested for prostate cancer. Led by Hall of Famer and prostate cancer survivor Michael Haynes, the message also features Tony Dorsett, Anthony Munoz, “Mean” Joe Greene, upcoming “Dancing with the Stars” contestant Michael Irvin and more.
The American Urological Association (AUA) recommends that men ages 40 and older talk with their doctor about prostate cancer testing, including the PSA test and a simple physical exam. The AUA also states that knowing your score today could help save your life later. Establishing a baseline PSA score at age 40 can help doctors better interpret your future PSA scores.
Filed under: Diagnosis, Risk Tagged: | Diagnosis, PSA, risk, testing
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“Know Your Stats” is really being promoted without supporting evidence for its benefit, and having Hall of Fame members urging testing is omitting half the message men need to hear. An outsider might view this as a self-promoting exercise.
Dr. Chodak:
Are you suggesting that the AUA Foundation may be promoting PSA testing in its own self-interests? I am shocked and appalled!
I am not sure that either you or I qualify as an “outsider” — but you may have noted that The “New” Prostate Cancer InfoLink was careful not to endorse the “Know Your Stats” initiative.
Awareness of potential risk for prostate cancer is by no means the same thing as just “knowing your score.” And getting a specific result on a PSA test is by no means a necessary and sufficient condition for getting a prostate biopsy.
So let us be clear — there are no data from a randomized, well-controlled, double-blind, multicenter trial to suggest that there is a clear reduction in risk of mortality as a consequence of screening for prostate cancer with the PSA and DRE tests. While the European screening trial suggested a survival benefit, that trial was not really a single trial, but rather a meta-analysis of several different trials with varied trial entry criteria and structures. The data from the PLCO trial in the USA clearly showed that there was no survival benefit — but then that trial was also severely flawed.
Is the issue any prostate cancer awareness or who is doing the awareness.
What would an appropriate awareness program look like?
Kathy:
The issue is INTENT, i.e., what is the goal of the program’s organizer?
Arguably, any really good and unbiased awareness program would begin with a thorough education initiative that had to be completed over a significant time period BEFORE anyone received a PSA test. Whether such a complex education initiative is FEASIBLE (let alone affordable or legally acceptable) is a whole other question.
How can anyone know the intent? Just like with the people taking part in the tea party protests, we enter a dangerous place when we start a discussion of intent.
The reality of today’s medicine is that there is no time to do a thorough balanced education initiative that has to be completed over a significant time period for everyone who gets a PSA test.
Also how do you get a man, who is negative about going to any doctor, to listen to such a broad initiative. Must be short and probably bulleted.
I spoke to a doctor who had a program for underserved men who proudly told me he educated 1,000′s of men. I asked how many chose to get tested and it was less than 200. The following year his numbers were very different with a higher percentage being screened. It was a public health, probably CDC, funded program so I can only assume that the funder questioned the low percentage of men who participated.
It was a difficult balance between frightening men and giving them relevant information.
If through insurance reform we no longer cover early detection than we will probably see more free testing programs. Men who can afford to be tested can be tested but what about the men who cannot afford it?
Personally I would like to see more emphasis on detailed education at biopsy. At least in my personal experience that is how it works successfully with many other diseases, heart and diabetes. One of the health reform discussions is a team approach to treating patients. Maybe balanced can be achieved eventually that way?
I agree that urologists may be guilty of selling their procedures but punishing them by blocking early detection potentially hurts patients and they are the ones we need to continue to be focused on. I like the presentation by Dr. Denis Cortese, Pres. & CEO of the Mayo Clinic. http://www.c-span.org/Watch/Media/2009/09/18/HP/R/23311/Mayo%20Clinic%20CEO%20Says%20Lawmakers%20Need%20To%20Do%20More%20On%20Health%20Reform.aspx They use a patient focused program. I would be very happy to see a patient focused discussion about early detection. Right now it appears to be focused at a very different level. The evidence based on trials is in fact inconclusive.
It is not black/white and unless we as a society can acknowledge the greyness we just continue with the status quo and potentially have more poor or underserved men being diagnosed with more advanced, expensive, difficult to treat cancer if early detection is not a covered benefit under reformed insurance policies. That was the situation when I began my journey as an advocate. I will never forget Tom Witte who asked his doctors to screen him. They refused, said he was too young. When he was finally diagnosed at age 51, his treatments cost over $10,000 per month according to him. He was dead at 56.
Maybe a compromise could at least be reached so men with a family history, AA men and men with history of exposure to certain chemicals have coverage for early detection. Military men, farmers and firemen all seem to have increased incidence and I am not sure that we have looked adequately at the cancer chemical connection for all of this group.
Rather than pointing fingers I would like to see movement for a solution focused on all patients and what is best for them. If not then either side winning means that the patient ultimately loses.
Dear Kathy:
Congratulations. You have just demonstrated that you CAN infer intent with considerable accuracy based on the behaviors of all concerned.
The “reality of today’s medicine,” however, is that the average 60-year-old man is about 10 times more likely to die of cardiovascular disease than he is of prostate cancer, so he would be wise to expend 10 times more effort on NOT getting a serious cardiovascular condition than on not getting prostate cancer. And how many men do you think are doing that? If one spends most of one’s time focused on prostate cancer, one tends to stop seeing the wood for the trees!
But I do not see the AUA guidelines as the same as some urologists pushing their preferred treatment. I believe that the AUA guidelines are a concerted effort to find the middle ground, screen, and evaluate the situation based on what is known at the time of biopsy. Then they say in a much louder voice than in the past that active surveillance is a preferred [form of treatment for appropriately selected] men based on the evidence we have now. It may not be perfect but it is an attempt to find a way to use the complete body of evidence we have now to find a way to have the system work in a way that benefits the patients. The other side is pushing a flawed study that was reported earlier than we anticipated. Was it really mature enough to make good decisions that potentially impacts on many men?
I get disturbed when I hear that early detection of prostate cancer has not been proven to save lives and therefore should not be a covered benefit. That puts ALL men in the same bucket. Last year according to the CDC we lost over 28,000 men to prostate cancer. I doubt that we will ever be able to get to the point where we have zero deaths from prostate cancer but we can lower the death rate and extend men’s lives. As advocates should the emphasis be on those men?
I wonder sometimes what the difference is in QOL and quality of death that men have had since the introduction of screening. I am not hearing the stories of men who have painful bone mets where they can no longer stand without a back brace or who when they roll over in bed their bones break. Simplistic statements where things are black/white and do not take the reality of real men into account I find problematic. I am also disturbed by policies that punish men without insurance or exclude early detection from insurance reimbursement. That punishes the men who may be more likely to need early detection. It makes the medical guideline benefit the haves and punish the have nots. Should we have two-tiered medical system?
The AUA guidelines may not be perfect but they do, in my mind, attempt to work toward a differential diagnosis.
Again my original question is if we care about men, what do advocates say to men? Are we silent? If we are silent will we go back to the days when we had yearly deaths closer to 40,000 per year? If we frighten men the way the doctor did in my earlier comment will we be moving in the wrong direction? What would a reasonable awareness message be that is different than the AUAF program that you discuss above. Do we want to migrate to a system where men who need treatment are treated too late and more expensively?
Kathy:
You are confounding so many things together that it is impossible to address them all. You need to discriminate between awareness of possible risk, need for PSA testing, need for a biopsy, need for active surveillance, and need for invasive treatment. It is absolutely critical for the advocate to be clear about these steps along the pathway. When they are not separated, people make poor decisions based on all the assumptions that have led to the current problems. What the good advocate should be trying to do today is help men to know and understand and separate these steps in understanding their individual risk for clinically significant (as opposed to histologically evident but clinically irrelevant) prostate cancer.
My concern with nearly all of the “awareness” initiatives that go on today is that their goal is simply to get most men to have PSA tests. That may or may not be a good idea for an individual man, based on all sorts of factors. He cannot possibly make a good decision if he doesn’t have time to think about it. If he doesn’t have time to think about it, he IS put onto the slippery slope of biopsy and diagnosis and treatment within a system that is still not fully acceptant of the distinction between clinically significant and histologically evident but clinically insignificant disease. I would have more faith in the AUA guidelines if I thought that every urologist in America was following them with care and rigor — but I don’t: many urologists make their living by taking out prostates, and many hospitals have to pay for their investments in surgical robots, IMRT equipment, and now proton beam facilities. Whether we like it or not, prostate cancer is seen as a cash cow by many in the health care community (and I am not pointing my finger at the urology community in saying this), so men do not get the best clinical advice.
I have been told that it takes approximately 10 years to change medical practice. We need to start now not run away from it because it takes too long or because it is too hard.
Comments on these documents on the website.
http://www.knowyourstats.org/downloads/Questions.pdf
and
http://www.knowyourstats.org/Mythorfact/pdf/MythVsFact_01.pdf
As someone who struggles with designing awareness documents I know that they have to be one pagers with lots of white space.
What you are talking about is the responsibility of the clinician. The advocate is responsible to get a man to his doctor. The biggest issue is what do you do with the men who are not insured or have access to a physician? If he gets a PSA/DRE that is suspicious then he will get to a doctor who should educate prior to a biopsy. Ideally at that time men should also get cholesterol, glucose, high blood pressure screening also. I am concerned that the education prior to the early detection is poorly timed because men do selective listening . I cannot control what the doctor tells him. I can help to make him aware of the issues, questions to ask and the need to see a doctor for a more complete discussion.
Well I have been talking about it for 10 years and the push back has been a lack of evidence. As a mutual friend of ours has said, “I don’t practice epidemiology, I practice medicine.”
No argument from me about how long it takes to change medical practice. We should have started 15 years ago. However, I absolutely do NOT agree that the only responsibility of the advocate is to get a man to his doctor. It is also the responsibility of the advocate to argue for changes in medical practice and to present those arguments to the medical community. Just because one doesn’t have an MD doesn’t mean one can’t have a valid opinion about how medicine is practiced.
Furthermore, I do NOT agree that “The biggest issue is what do you do with the men who are not insured or have access to a physician?” That is just one of many issues. In my view the biggest issue is what “first do no harm” actually means in the consideration of the diagnosis and treatment of prostate cancer today.
I’m not sure which mutual friend you are referring to, but everyone who practices medicine does so with a point of view. That point of view is influenced by data, clinical and epidemiological, and s/he is utterly correct, until relatively recently the data has been largely epidemiological — and of pretty dubious value at that.
Mike,
I spent the past few days with two AA men from central Virginia. They work with many farming/blue collar AA men. Many do not have insurance and right now the only way they can get early detection is through the free screening programs that are given in the area. They are upset because the past few years the American Cancer Society (ACS) has had an AA Men’s Health program where they would bus men in from various centers, including the churches.
Since the release of the PLCO trial the ACS has decided to take the PSA/DRE out of the free tests that are offered. These are not highly educated men but they care very much for the others in their community. They are very upset that it seems as if this is working against their groups who need these services the most. I just think that the outcome of what is happening now is not very well thought out.
Kathy:
I do not disagree with you. Most of this is NOT well thought out by anyone — least of all by some at the ACS, but I didn’t think it was well thought out BEFORE we got the results of the PLCO trial either!
People want this to be simple — black or white. It isn’t. It’s complicated, and what you know does and should affect how you think about it all, which is why one of the obligations on the advocacy community is to NOT pretend that it is simple.