We strongly recommend to all our readers a commentary in this week’s New England Journal of Medicine by Drs. Pamela Hartzband and Jerome Groopman. It deals forcefully with distinction between “statistical proof” of the lack of value of PSA testing and the accuracy of that statistical proof as a basis for clinical decision-making.
We also recommend this article to the members of the U.S. Preventive Services Task Force … but they may not want to read it.
We should emphasize that this article does not change our position that annual, mass, population-based screening for prostate cancer with the PSA test is a very dangerous tool (because it may lead to more harms than benefits). On the other hand, it most certainly endorses our belief that the decision to have a PSA test (or even annual tests if appropriate) is entirely a matter for each individual man in discussion with his doctor.
Filed under: Diagnosis, Living with Prostate Cancer, Risk Tagged: | death, life, Prevention, risk, statistics
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Great article. Especially the ability to adapt to changes.
This editorial more or less “had me” until I got to the last four paragraphs on how men are really just as happy as not to be impotent and in diapers.
The quality of data and analysis in terms of measuring quality of life and adaptability is many degrees of freedom more questionable than the epidemiological analysis of PLCO. Take a walk to the nearest academic library and sift through the literature, particularly the methodology sections, of these rationalizing, self-serving to the urology community, typically very small N, short timeframe if not point in time, self-reported studies using instruments developed by physicians with zero experience or knowledge in how to effectively construct valid, reliable perceptional items and scales. These are nothing but marketing products produced via hubris and intended to influence. This is a very disingenuous editorial championing a very disingenuous body of literature.
There is more to life than death. There’s personal autonomy. There’s normal functionality. There’s the capacity to engage fully in whole relationships. There’s not being subjected to unnecessary and counter-productive injury.
It is hard to believe the statement made in this article:
“there is no difference in assessments between men with prostate cancer who underwent prostatectomy and those who chose active surveillance.”
I don’t believe I see a reference to the source of this comment.
Dear Tracy:
I think your interpretation of the last four paragraphs of this article and mine are very different. You might like to re-look at this comment by the authors in one of those paragraphs: “There is often a profound disconnect between the way healthy people view medical conditions and the way patients with these conditions view themselves.”
I would respectfully suggest to you that the whole point of this article is to entirely agree with the points in your last paragraph above … in particular the one about personal autonomy. Neither of these commentators is a urologist. And one man’s bad decision from your perspective may be an excellent one from his.
Dear Steve:
One of the things that has never failed to amaze me is the percentages of men who state that they are “satisfied” with their short- and long-term outcomes after various forms of treatment for prostate cancer, even when they clearly have a lesser quality of life post-treatment than before treatment. The study of “satisfaction” studies (not just in prostate cancer patients) is a whole research area of its own. Humans appear to have an amazing capacity for justifying to themselves that the decisions they made in the past were right, good, and utterly justified by the consequences. At the most basic level, something like 90% of Americans who buy a new car tell researchers later that they are “satisfied” with their decision (even though there are multiple reasons to believe that most of them are actually nothing like highly satisfied). My perception of this issue is that many, many people have a very hard time admitting to themselves when they make less than perfect decisions, and the idea of admitting such a failure to someone else (i.e., a researcher) is tantamount to being a taboo.
Steve,
And the only possibly valid pool would be those who have done both.
So often we study the answer without studying the question.
I agree with your perception regarding many decisions people make and their subsequent evaluations of those decisions. However, I believe that an additional factor to assess with prostate treatment evaluations is the reluctance of patients to honestly and accurately respond to survey questions due to the sensitive questions being asked. I believe many men are reluctant to “put into writing” that they are having issues with erections and continence because it makes them appear to not be tough enough to handle the side effects that are, in reality, truly impacting their quality of life. This is another factor that results in skewed survey results relating to treatment satisfaction and QOL.
Steve:
That is 100% the case … The male “denial of reality” syndrome is Exhibit 1 in multiple aspects of the management of prostate cancer … from the willingness of men to have appropriate PSA tests and and DREs (I was listening yesterday to a gentleman of color who repeatedly referred to rectal exams as “being violated”) to the unwillingness of many [male] urologists to bluntly acknowledge the frequency and seriousness of the adverse effects associated with radical prostatectomy.
I agreed with the comments about the difficulty of anticipating your reaction to a problem or deficit, of mentally imagining yourself in a different situation and deciding how you would react. Prior to my prostatectomy, I was so concerned about the likelihood of impotence that I nearly opted for no treatment. Now I have zero PSA and zero potency I find I can deal with the impotence far better that I thought. And work continues.
The 15-minute interview with the article authors is well worth listening to as well.
I had a radical prostatectomy 4 years ago. Thank God I did, and thank God for the PSA tests. I have some side effects, wish I didn’t, but I watched my father die from prostate cancer which wasn’t detected until it had spread all over his body. He was 56 years old when he was taken from us. After surgery my PSA level stayed at zero for 3 years and I was able to purchase a long-term care insurance policy. Now my PSA has started to rise again and I’m concentrating on health, excercise, and wellness. I have no illusions about this disease — I know it intimately. But the PSA tests gave (and continue to give) me the information I need to make decisions and manage my life around the disease.
Individuals should have the choice as to whether or not to get these tests based on their own judgement, research, and advice from their physician(s). Nothing in life is certain … but many things can be more accurately predicted given more and better information. The information I gather from my physician and the PSA tests (interpreted by my physician and researched by me independently) is guiding my decisions in many areas. This will result in better outcomes for me, my family, my employees, and others who depend upon us.
Do I wish I didn’t have cancer and the side effects of surgery and follow-up radiation? You bet I do. Is my life what it was before the surgery? No. Am I satisfied with the outcome? Given the alternative, you bet I am. To suggest that I am somehow deluding myself into justifying my decision on treatment options is offensive. It also is profoundly disrespectful.
I know what the progression of this disease looks like. I watched my father for 5 years after his diagnoses. I know that the early discovery of my cancer thanks to PSA tests has given me the gift of time to complete things that will benefit my family and community for many years after I’m gone. I know that the information I continue to get from my PSA tests will guide my decisions going forward.
That is one patient’s point of view.
Dear Roy:
No one that I know is suggesting that someone like you is deluding yourself. Given your father’s experience — and now your own — you are exactly the sort of individual who should start getting PSA tests early and often, and you appear to have acted 100% appropriately throughout. You also are clearly entirely realistic about what has and is happening. However, you also need to appreciate that an awful lot of men who get diagnosed with and treated for prostate cancer are not like you or your father at all.
It is good to see an essentially philosophical article here. I am a retired philosophy teacher and have no love at all for the field of “medical ethics.” This article and the replies here show that many people can and do think at least as clearly as my academic colleagues about the choices open to them, assuming autonomy. That’s a difficult assumption, since it strongly suggests the need for having as complete information as possible, when making a vitally important decision. Not mentioning this is my only criticism of this article. The critique is important, I think, since using maximally full information requires some notions similar to those used in Bayesian statistics, a subject strangely missing from this otherwise good article. If this critique is correct, it suggests that expected utility (and how its quantified, and over which group) should be supplemented with more subjective notions. If I have one more QOLA (… Afternoon), I’ll try to think hard about this.