From 12:00 noon to 01:00 p.m. on Wednesday, December 7, the Men’s Health Caucus — Prostate Cancer Task Force and the Men’s Health Network will present “Prostate Cancer Screening: Dangerous or Life Saving?” (a lunch briefing about the controversy over screening for prostate cancer) in the Rayburn Building, B-340, on Capitol Hill in Washington, DC.
Opening remarks at the meeting are scheduled to be made by Congressmen Heath Shuler, Jon Runyan, and Joe Baca.
Other speakers will include:
- Congressman John Barrow, 12th District, Georgia, U.S. House of Representatives
- Chiledum A. Ahaghotu, MD, FACS, Associate Professor of Surgery and Chief of Urology, Howard University Hospital and RFJUS Health Policy Consultant, American Urology Association
- Tom Berger, PhD, Executive Director, Veterans Health Council
The event is open to the public; all interested persons are cordially invited to attend.
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Just heard a “scary story.” … Stan Rosenfeld sat on a panel yesterday discussing cancer screening with UCSF medical students; also on the panel were Dr. Matt Cooperberg (one of Peter Carroll’s proteges with excellent epidemiological experience) as well as a UCSF female epidemiologist who sat on the USPSTF committee. I don’t know her name. She told the students there is no measure of aggression for prostate cancer — she clearly had never heard of the Gleason scale. Matt told her flat out she was wrong. It makes one wonder how knowledgeable the USPSTF committee that recommended a D grade for PSA testing was!
Rick D.:
” … a UCSF female epidemiologist who sat on the USPSTF committee. I don’t know her name. She told the students there is no measure of aggression for prostate cancer … ”
Someone should track this down and get the facts!!! Ask Stan Rosenfield to document this. It may very well be typical rumor-making though.
I have heard the same from well-qualified scientists and medical doctors in the field such as Dr. Snuffy Meyers. These task force members were not qualified to perform their duties. This resulted in incorrect recommendations. Some of which appear to be politically expedient.
James:
I would respectfully suggest that there are strong differences of opinion about this matter across the entire medical community — and even within the specialist communities of urologic oncologists and medical oncologists. Casting aspersions about the “qualifications” of individuals and groups whose opinions happen to differ from one’s own because they assess the available data in ways that one disagrees with may be personally satisfying but it is not exactly constructive and it adds nothing to what is a very serious debate.
I think she is talking about a screening test that differentiates between aggressive and slow growing cancer, something prior to biopsy.
For Al C. …
Her name is Kirsten Bibbins-Domingo. Please be assured this is not typical rumor making.
I was not present, but Stan sat on the Monday panel with her and says she made a number of statements indicating her lack of understanding of the PSA test and prostate cancer in general.
Acknowledging Kathy’s interpretation, I am told that is not what Bibbins-Domingo said.
For Mike …
Stan will be at the conference next week so chat with him if you have the opportunity.
As far as I can tell, the only UCSF member of the task force is Kirsten Bibbins-Domingo, PhD, MD.
Dr. Bibbins-Domingo is an associate professor of medicine and of epidemiology and biostatistics at the University of California, San Francisco (UCSF), and is co-director of the UCSF Center for Vulnerable Populations at San Francisco General Hospital. Dr. Bibbins-Domingo’s research interests include understanding the interaction between social, behavioral, and biological factors that place vulnerable groups at risk for cardiovascular disease early in life and population-wide interventions that may prevent disease in these groups.
The bios of the members of the USPSTF can be found here.
They hardly appear to be intellectual, academic or clinical slouches. And Kathy is correct about screening tools prior to biopsy, which in and of themselves present real short- and long-term risks to men, as Mike frequently points out. Further, we all know that the current standards of practice of biopsies are less than optimal because they lack the ability to provide clear information on the extent of disease.
I reiterate Mike’s comment to James. And, quite frankly, Dr. Myers does nothing to further his admirable and formidable reputation by publicly indulging in emotionally-driven specious claims. Between remarks such as these and Dr. Thrasher’s wailing violin video, I have even less confidence and more suspicion of the motivations of the prostate cancer clinical and advocacy community than I had before this controversy emerged.
Tracy,
In other words, we advocates can only produce “emotionally-driven specious claims” according to you? As a survivor and physician that treats prostate cancer, Dr. Myers’ opinions are valuable. They provide guidance to us, who in surviving the disease, are trying to inform other men of the risk of prostate cancer. He knows more about prostate cancer than all those task force members will ever do. … He lives it.
The USPSTF members are qualified, but their recommendations are unfair and based on selective biases. There is currently enough evidence that early detection with PSA and treatment results in a survival benefit. The only member of the task force that has published about prostate cancer is Dr. Wilt, who is an internist. His imprint is easily recognized by those of us who has followed his participation in the process through the years. If this recommendation is approved as written, many asymptomatic men will be diagnosed late and will have a higher risk of dying of prostate cancer. This is not the way to prevent the over-diagnosis and over-treatment that currently exists which is the stated objective of the recommendation.
Ralph,
There are both clinical and patient advocates who keep up with the research, can think about the complexities and contradictions in diagnosing and treating prostate cancer, and are willing to speak out as forcefully for what is wrong with the current state of prostate cancer management as for what is right about it. So, advocates do not “ONLY produce emotionally-driven specious claims,” but some certainly do some of the time.
One of the many fascinating beliefs that the USPSTF debate has brought to the fore is that there remains a faction of prostate cacner advocates that wholly and firmly believe that there is simply no such thing as either “indolent” or “low risk” prostate cancer. If one believes it’s simply impossible for such conditions to exist, then — no doubt — the USPSTF recommendations must seem extraordinarily ignorant and irresponsible.
Another (and frequently overlapping) prostate cancer advocacy faction has simply rationalized away the desire to be continent and able to both have and enjoy the experience of sex as trivial and selfish and self-indulgent. For this faction, there’s no reason to change anything about the current procedures for diagnosing and treating every case of prostate cancer (except to find more men to treat sooner), because only selfish and perverted men and couples would want to engage in such frivolity anyway. One almost gets the sense that this faction has come to convince themselves that they’re doing men a favor — saving their souls as well as their lives.
I understand that if one starts from the assumptions that there’s no survivable untreated prostate cancer and that human sexuality is optional and indulgent, then USPSTF’s evaluation of the existing research must seem shockingly dangerous.
However, whether the above-described factions choose to acknowledge it or not, there’s also a well-established body of research that has identified over-diagnosis and over-treatment as a serious problem that subjects men to unnecessary surgical risks and risks for organ and tissue damage from radiation in addition to the euphemistically dismissive “quality of life” concerns. For the prostate cancer clinical and patient advocacy factions, the broader health care community (including the preventive care practitioners served by the USPSTF), and the general public that acknowledge the last decade or so’s worth of research, the horrible work of managing prostate cancer is not so simple. They understand that while the stakes are very high, the probability is very low that treatment is actually saving a life, and they also understand the probability is very high (100% to “flip of a coin”) of being irreparably maimed by conventional treatment. And they understand that there is currently no way to definitively manage the risk of either. If one sees the world from this faction’s perspective, it is reasonable to consider alternative approaches to screening that will minimize opportunities for over-diagnosis. And there’s even a faction that disagrees with dismissing and trivializing men’s capacity for sexual intimacy, finding physical contact between people who love each other to be a healthy, productive asset in sustaining emotional connectedness and a positive outlook on life.
I understand that Dr. Meyer’s experiences as both a patient and provider of prostate cancer treatment provides wonderful insights and hopes for men with a similar diagnosis. However, lashing out and attacking colleagues for working from assumptions different than his is not helpful to anyone — not to the radical-treatment-ASAP-at-any-cost factions and not to men with low-grade and indolent forms of prostate cancer.
I know you’ve been fighting this issue for a long time (e.g., http://www.psa-rising.com/upfront/dole_rvalle.htm) and settled some time ago on a body of research that supports your assumptions and experiences. Perhaps Drs. Meyers and Thrasher did too. The USPSTF’s job is to help primary care providers educate patients on risks and benefits of screening. A close read of the draft recommendations suggests just that:
“The USPSTF recognizes that clinical decisions involve more considerations than evidence alone. Clinicians should understand the evidence but individualize decisionmaking to the specific patient or situation.”
“While the USPSTF discourages the use of screening tests for which the benefits do not outweigh the harms in the target population, it recognizes the common use of PSA screening in practice today and understands that some men will continue to request and some physicians will continue to offer screening. An individual man may choose to be screened because he places a higher value on the possibility of benefit, however small, than the known harms that accompany screening and treatment of screen-detected cancer, particularly the harms of overdiagnosis and overtreatment. This decision should be an informed decision, preferably made in consultation with a regular care provider. No man should be screened without his understanding and consent; community-based and employer-based screening that does not allow an informed choice should be discontinued.”
To describe these statements as a “gag order” is an act of hyperbolic propagandizing — not subtle at all. … Ad hominem attacks on members of the USPSTF is lowest common denominator behavior in the “court of public opinion.” These kinds of misrepresentations and attacks just make the AUA and their supporters look venal and self-serving.
Tracy,
It is amazing to me to read your descriptions of the different factions of advocates. I have been at it for almost 20 years and these descriptions are foreign to me. It must be that my personal experience in the world of prostate cancer is very different than the personal experience that drives your perceptions.
I am well aware of the over-diagnosis and over-treatment situation. The real issue is in establishing the magnitude of the problem. Real life results about this are very different from the computer model results being promoted. There is a major problem in under-treatment across the world. This is never mentioned. Neither is the natural history of untreated prostate cancer as it appears in the cancer registries of the Scandinavian countries. There, prostate cancer has been treated conservatively and androgen deprivation applied only as palliation. You see, there is a degradation of quality of life when prostate cancer progresses that is not currently being recognized by those that proclaim the known harms of treatment. Mortality from prostate cancer there is exceedingly high(55% or higher depending on age at diagnosis). There is a price to pay if history is ignored!
The objective of the USPSTF is to reduce over-diagnosis and over-treatment. In their review of the current medical literature their opinion is that there is no substantial evidence that treatments save lives. I see their review as selective and biased. As a survivor I object to them recommending to the gatekeeper physicians to not test asymptomatic men with PSA. Where in their analysis is the fact that there has been a 40% reduction in prostate cancer deaths in this country? Where in their analysis is the fact that in countries in which PSA is hardly used, mortality rates of the disease continue to increase? I understand that individuals have the right to ask for the test, but if those individuals are told that treatments do not save lives and cause more harm than good, who would ask to be tested? By doing this, the USPSTF is taking away the right of a man to decide what to do if diagnosed early with early stages of the disease.
I obviously interpret things very differently than you. That doesn’t make me wrong and you right. The concern is also that, with limited resources, the existing level of testing with PSA will diminish and the reduction in the prostate cancer mortality rate accomplished here in the last 20 years will go back where we started …
Ralph:
What epidemiological studies should the USPSTF have studied that they ignored in their “selective and biased” review?
If you are “well aware of the over-diagnosis and over-treatment situation” (and truly understand and appreciate the unnecessary cost that hundreds of thousands of men have to pay when subject to this “situation”), where and how would you intervene in the screening process to effectively manage both over-treatment and saving the lives of men at risk of progressive prostate cancer? Because in all the (sometimes shrill) voicing of outrage and criticism of the USPSTF’s draft recommendations coming from some sectors of the prostate cancer advocacy community, I’m not hearing authentic interest, much less commitment, to addressing this HUGE problem.
Simply telling men to buck up and accept the consequences of over-treatment because they were just unlucky to be diagnosed at a moment in history when over-diagnosis and over-treatment were evident, but insufficient tools have been developed to protect them from both over- and under-treatment is a simply inadequate response.
If there was any indication from the pro-screening-of-everyone-all-time factions that they cared about the costs to men of over-diagnosis and over-treatment, the pro-screening factions would have a lot more credibility than they currently do.
Tracy,
Answer: Why has the USPSTF failed to explain the 40% reduction in prostate cancer mortality here since the PSA test became available? Is it noteworthy? Happened spontaneously?
Answer: Why prostate cancer mortality flat-lined or even increased in countries were the use of PSA testing is low? Isn’t that important to note? Why is that happening? Why is the USPSTF ignoring this?
Answer: There is no mass screening faction effort. It is idiotic and costly to screen every man. It is smart to educate men to have a baseline PSA if they are at increased risk. This before they have symptoms. The USPSTF would prevent this from happening if approved as is.
Who tells men to “buck up” and accept the consequences of treatment? Do you have proof that this is happening? Or are you blowing smoke or talking from your personal experience?
How would I intervene in the screening process to avoid over treatment? I would continue to do what I have been doing all along. Educate myself and inform others of the real issues and not generalize like you are doing.
If your mind is set and you believe that lives are not being saved, you will continue to support the recommendation and if approved we will regress to the time when most men were diagnosed with advanced stages of the disease and more unnecessary deaths.
My guess is that this has been a wasted exchange. There are more rational ways to avoid over-treatment and still prevent so many younger men dying of prostate cancer before the age of retirement …
Dear Ralph:
I am sorry to have to disagree with you when you say there is “no mass screening faction.” Certain members of the Prostate Cancer Roundtable are still very definitely loud in their belief that everyone should be getting PSA tests on a regular basis … and I regularly get flak from them when I point out that this is not a good idea — even in the unlikely event that it was feasible.
Mike,
If there is such faction, what have they done to “mass screen” any number of men? Half of the population “at risk” has never been tested. If they exist like you mention (and I believe you), they are dreaming and going nowhere with that. That alone tells me they do not understand what PSA can and cannot do.
I agree with you that we will never see mass screening as it is an overkill and economically not feasible with a marker that is not specific enough such as PSA is.
Sometimes I feel like giving you flak too! LOL ;-)
You’re allowed to give me flak (and so is Tracy). At times I agree with each of you .. and at times I disagree with each of you.
Let me just say that groups that drive buses around America giving PSA tests indiscriminately to men at everything from country fairs to mall parking lots — without any form of really meaningful discussion beforehand — are not, in my opinion, doing anyone a great service. Neither are those who insist that, for ethnic reasons, everyone of certain skin color “has to” get screened on a regular basis. One of the few places I agree with Dr. Brawley is when he says that every man needs to be able to make up his own mind about PSA testing based on sound and reliable information.
As I think I have said just a few time before … If we had spent as much money on educating men over the past 20 years about the risks and benefits of PSA testing as we have spent on trying to get them all to come in for a PSA test every year, we would have a better informed male population and those most in need of a PSA test might well have been more likely to get one!
You may have forgotten this, but, when we started the meeting in Las Colinas, I carefully and deliberately explained to the audience (at my then age of 50) that I had never had a PSA test and saw no particular reason why it was a good idea for me. I am pleased to be able to inform you that at age 63, when I did have a follow-up PSA test after a brief urinary tract infection, my PSA had dropped back down to 1.2 ng/ml. My internist and I have intellectual discussions about whether giving me PSA tests is a good idea. He has gradually accepted my viewpoint.
:O)
Mike,
I am old and forget more about things I should remember these days, but I do remember your words at Las Colinas. I remember that because July 20, 1992 was the day I was released from the hospital after a 23-day stay after prostate surgery. That day in Texas, 4 years later was my anniversary. To be honest I thought I was going to leave my bones in that Tucson hospital at that time, but as you see, against all predictions I have beaten the odds …
I have participated in two or three screening events here providing information. One event targeted many Spanish-speaking males. I soon realized that many of the participants had no insurance and if their PSA results were abnormal, they would be stressed and up the creek. Although invited many times, I do not participate anymore … I rather pass information.
A PSA of 1.2 ng/ml is pretty normal for someone your age. BTW, I think that your internist is on the higher ground and for you a test every 4 years is the way to go. But then, if you won’t listen to him, why would you listen to me … ;-0
I have been following this good discussion I inadvertently, albeit gratefully, stimulated.
Ralph — As Mike mentioned, there are several groups on the Roundtable that favor mass screening — mike can correct me, but I believe they include Us TOO, CPCC, Zero, PCF, and more. They lack funds to be more effective; however, I beg to disagree with you, Ralph, that “they are dreaming and going nowhere.” Good work has been done and continues to be done in educating both men and medical professionals as to the need for screening — especially in high-risk groups, as well as offering screening to those economically deprived.
That brings me to Mike’s veiled reference to skin color. There is little argument that African-American men constitute a high-risk group for prostate cancer. We are largely agreed that high-risk groups should be screened — thus I challenge mike’s statement, ‘Neither are those who insist that, for ethnic reasons, everyone of certain skin color “has to” get screened on a regular basis.’ Mike — why do you oppose mass screening for African-American men … or at the very least, a mass program encouraging individual prostate cancer advocacy for African-American men.
rd
PS: I watched some of today’s proceeding son the net. Sadly, I felt Peter Carroll brushed off your question, Mike. Was there any discussion about the perceived impact on active surveillance of changing the name of minimal incidence (i.e., 2 cores or less, < 2 mm total, 3 + 3 max)?
Dear Rick:
(1) I have no problem with anyone making an intense effort to advise African-American males that they appear to be at high risk for prostate cancer along with the risks and benefits of PSA testing. What I object to is any man being given a PSA test with no prior education about and/or discussion of the risks and benefits of having such a test. Most people are under the impression that there are no risks associated with PSA testing. I disagree. I think the risks of PSA testing are considerable … if you don’t know what you may be about to get into. Part of the problem is that we misuse the term “screening” when we mean “testing” of individuals. “Screening” truly only refers to the mass testing of populations.
(2) There was discussion of the “naming” of low-risk prostatic neoplasia on at least two occasions. (I was out of the room for one of them while on a conference call.) I did not get the impression that there was much enthusiasm for or even interest in this.
(3) I am not sure that Dr. Carroll understood what I was trying to get at with my question, so maybe I hadn’t expressed it clearly enough.
Rick,
I was talking about the faction that supports “mass screening.” I have been part of Us TOO for 19 years and they advocate education and support. Never in any meeting I have attended anyone supports mass screening with PSA. If a man is at risk, we educate them about the PSA test and what it can and cannot do for him.
Ralph:
I refer you to the screening recommendations on the Us TOO website. Summarizing: Us TOO recommends annual screening for all men over 40 — and for all men over 35 if they are in high-risk categories.
rd
Is this event being broadcast on C-SPAN?
At age 63, against my family physician’s recommendation because of my wife’s insistence, I had my first PSA test. It was high — 6.3 — so I was referred to a urologist. He performed a biopsy that was negative. A year after the first PSA test, I had a second one. It was higher yet — 8.8. A biopsy this time was positive. Both the urologist and family physician recommended watchful waiting. I chose treatment because my father turns 98 next week and all but one of my uncles lived quite long. None of my seven brothers has been diagnosed with prostate cancer so far but I am the only one who served in Vietnam. Because I can reasonably expect to live long enough that my prostate cancer would become symptomatic, I believed that I would eventually have to do something about it. I chose proton therapy because it gave me the best shot at avoiding the nasty side effects so often found with the more common treatments. No one told me that I was at higher risk for having served in Vietnam or that the VA had programs to help vets in my situation, so I wrote “Prostate Cancer and the Veteran” to help others.
Rick,
The Us TOO recommendation is for younger men to have a baseline PSA and cannot be defined as mass screening. Those (mass screening) recommendations are issued by organizations such as the NIH after research has demonstrated that the test in question is effective in detecting cancers earlier than if the cancer were detected as a result of the development of symptoms. Also, that evidence is available that treatment initiated earlier as a consequence of screening results in an improved outcome.
The current situation is that the USPSTF recommends only testing when symptoms could be caused by occult disease while advocates consider this to be an unfair recommendation. If the intent is to avoid treating very low-risk cancers, this recommendation ignores the potential value of PSA to identify cases that would benefit from early treatment. To solve a problem caused by the current diagnostic uncertainty they create another one. One that can cause the unnecessary death of men from prostate cancer.
With the greatest of respect, Ralph, Us TOO appears to recommend annual screening for all men over the age of 40 — essentially the AUA position — this goes well beyond baseline testing.
Reading their screening recommendations, these are close enough to qualifying Us TOO as a faction that supports “mass screening” (your wording) to satisfy advocates, like myself, who support the concept.
Bottom line is that screening is about information, not treatment. The issue with mass screening is how the information is presented and interpreted rather than the actual screening.
rd