The New York Times didn’t kill this patient

A loyal reader sent me a doctor-written column with the provocative headline, “My Patient, Killed by The New York Times.”

First, keep in mind that the website that posted this, Mediaite, is all about the media covering (really fawning and dishing) itself. The purpose of this story, with its provocative headline, sad outcome, and mea culpa tone, is to generate “buzz.”

Then understand that this is a story of one patient who made an informed decision to forego PSA testing, based on the fact that he was an intelligent person without symptoms who’d read the literature (or at least responsible press coverage of said evidence). He did not want to open the Pandora’s Box (literally: crapshoot) that is PSA screening.

Yes, he wound up with advanced prostate cancer and subsequently died. Had he had his prostate removed or radiation to ablate his cancer, and wound up with horrible side effects (impotence, incontinence) would he value the trade-off?

I offer you the counter-anecdote of Ted, who in a discussion with me, insisted that he get a PSA test because his heroes Joe Torre and Norman Schwarzkopf told him to. When it came back at 4.10ng/dL (threshold 4.00), he went for biopsy (what else to do?) which showed low grade, gland-confined prostate cancer. Fearful of the “C” word, he couldn’t live with the idea of doing nothing (“watchful waiting”) about his cancer. So he chose external beam radiation, with the hope that it would be less damaging than radical surgery.

What is radiation proctitis? Is that when your rectum is severely burned as collateral damage by the radiation beam that’s targeting the prostate, and you wind up with rectal pain and bleeding for years? Why yes, it is. That’s in addition to the impotence and loss of bladder control that Ted experienced and had hoped to avoid by foregoing the surgical knife.

Or George, who dutifully came yearly for his digital rectal exam, got his PSA, and when his biopsy showed low grade prostate cancer, opted for surgery. At 64, he told me he’d have rather be dead than live wearing adult diapers his incontinence now thrust upon him.

PSA is a contentious issue. There will always be anecdotes showing that one approach or another is WRONG. The “retrospectoscope” is always 20/20.

But when an entire industry has evolved to profit off of “advanced” treatment for prostate cancer and innocent people are harmed in the process, I get angry.

I took an oath to do no harm. Treatment that causes more harm than the disease it’s designed to cure is tragic.

People will read this post and be outraged. So let me be clear: I’m not saying that no one should get a PSA to screen for prostate cancer. That genie has left the bottle decades ago. I’m saying that the medical and disease-mongering industries owe it to men to be more forthcoming about the risks, benefits, and alternatives to screening.

I try my hardest — and I’m countering years of public awareness campaigns. Just ask my Dad, who at not-quite 75 keeps getting the darn PSA year after year despite my advice to stop. “How can a test that detects cancer be harmful?” he always asks me.

John Schumann is an internal medicine physician who blogs at GlassHospital.  

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  • http://twitter.com/purplesque Neha Jain

    Yes. A hundred times yes.

  • doc99

    Frank Zappa was unavailable for comment.

  • EE Smith

    The doctor says “He was one of my first patients and we had developed a friendship over the years.”

    You have to wonder about any patient who would take their medical advice from the mainstream media rather than from the medical practitioner they had established a longtime relationship with. He trusted a newspaper article more than he trusted his family doctor? What’s up with that anyway?

    If the NYT, or USA Today, or Oprah Winfrey, told me I should do “X”, but my longtime family doctor advised me to do “Y”, I think I’d probably go with “Y”. Or at least get a second MEDICAL opinion before I dismissed the advice of my doctor in favor of some random media commentator.

    • SarahJ91

      Unfortunately, my doctor is now employed by a hospital that insists upon extracting as much screening money from each patient as possible, with no regard to the doctor-patient relationship. They call me at home, they write to me–using a cheesy rubber stamp of my PCP’s signature and often without her knowledge–to push *their* “recommendations” about my need for screening. Basically, they market to me. This undermines my relationship with my doctor. How much pressure is she getting from her employer to push certain tests?

      This is the sort of thing that causes patients to turn to other sources for information. I will say I don’t go to Oprah or her minions, but I no longer trust my doctor because I have no idea how much of her recommendations come from her and how much from her money-hungry employer.

  • labamagal

    I’m not sure I understand the purpose of this article. If you don’t agree with testing, then offer alternatives. If you feel that the ‘medical and disease-mongering industries’ are doing a disservice to these men then give advice on how best to navigate the overwhelming advice on what they should do.

    Was the purpose of the article to say men don’t need to be tested and should just wait and see? Or was the purpose to tell men they should be their own voice of reason and not rely on others to make decisions for them? Whatever the purpose, it wasn’t clearly stated, at least not at first. The message was hidden.

    Your examples, in my opinion, offered conflicting and confusing advice. I am not a man, but I am a daughter to a 75-yr old man who is stubborn and unwilling to do much of anything when it comes to his health. Sadly, when most men read your article, I think all they will remember is the burning, impotence and adult diapers. Who should they listen to or believe?

    I THINK what you were trying to do was say testing isn’t needed? But why isn’t it needed? I’m not sure because you didn’t go into detail; you only offered horror stories about those who did get tested and made choices based on the outcome of those tests. But I don’t think you meant to scare men, or did you? Cancer is scary for everyone and it seems that it’s all around us. I get so tired of hearing conflicting recommendations about mammograms and how often and how early women should have them. When in reality it would be better to offer baseline recommendations based on each person’s individual situation.

    Your headline was also misleading because it made one think the article was going to be about the NY Times article and the patient and what he could have done differently.

    Please understand that those of us who didn’t go to med school (but are still intelligent, info-seeking beings) need better guidance and info to make informed decisions. We don’t need scare tactics or personal decisions to cloud our judgement. We just need unbiased info so we can make our own choices. You said you told your dad to stop getting PSA testing. But why should he stop? What should he so instead? I think your article lacked sufficient info with which to make good decisions. I definitely wouldn’t let my dad read this because he only grabs bits and pieces of info as it is. And all he would have taken away from it is the negative.

    • http://www.facebook.com/jewel.markess.3 Jewel Markess

      ” If you don’t agree with testing, then offer alternatives.”

      Sometimes you cannot do anything and sometimes there is a bad test that has no proven benefit but has risks and there is nothing. Now, some of us being intelligent people have to make a decision whether we want such a test or nothing. In some cases there is no clear choice what “better be safe” means as all alternatives have potential benefits and risks. Given that we aren’t hopefully 5-year olds, we should be able to make these decisions for ourselves. You want to feel good about “doing something” even if this doing something may not be helpful. The article explains in very simple terms the risks of screening. You are free to ignore it.

      NY Times article tells an anecdotal case when maybe the test could’ve saved somebody’s life. Then, maybe not, since there is absolutely no way of knowing if the test would’ve helped in any particular case. For all we know this person’s cancer had been so aggressive that it would’ve killed anyway. Intelligent people need to evaluate the benefits and risks of both “doing something” – often for the sake of doing something and nothing. You want to feel good about “doing something” even if doing something may not be the best option.

      The articles tells you that the test has uncertain benefits and is likely to have risks. These are facts. Now, it’s up to you to make a decision what you want based on the facts. If your father doesn’t want to do anything, it’s his choice and yes, he’ll have to live with it, but you have absolutely no right to impose your choices on him. Your father may well be right.

      The test may find cancers before they spread. Some of these cancers would’ve spread anyway. Some of them are indolent and would’ve never spread in the person’s lifetime, but the treatment may have caused impotence and incontinence. Now, there might be a group of cancers that spread fast enough to kill yet slow enough for the test to find them before they spread, in which case the treatment might help (but with risk of complications). It’s questionable that this third group of cancers even exists with PSA since the studies haven’t shown the benefit. However, if the cancer is indolent or grows so slow that you are likely to die from something else before it spreads then the treatment isn’t going to make a difference, but it still has complications.

      I recommend reading the book by H Gilbert Welch “Should I be tested for cancer”. Then maybe you’ll have a clue that tests have benefits and risks, and that it’s up to you as an intelligent human being you are to decide what is better for yourself.

      • SBornfeld

        There is no basis on which to make a decision. In the wake of the USPSTF paper on PSA screening, the recommendation is not to screen–not anyone. In the commentary surrounding the release of the draft and final statements, patients were advised to speak with their physicians to make an informed decision. But the only information is that “harms” of PSA testing are likely to be greater than the benefits–period. There is no stratification for age, for race, for family history.
        And that is the state of knowledge.
        Make no mistake–though they claim to deal only with preventive measures, the clear implication is that treatment of asymptomatic prostate cancer is not effective. Screening is attacked for not accomplishing something it was never designed to do–to determine which prostate cancers will kill, and which will not. Biopsy? Gleason score? The USPSTF is silent, except to say the biopsies hurt and may result in infection.

        I swear I’ve never heard the term “indolent cancer” thrown around so much as I did surrounding the release of this statement–you’d never know that prostate cancer was the second biggest cancer killer among men.

  • Sneaky Booger

    “Treatment that causes more harm than the disease it’s designed to cure is tragic.”

    This is an unfounded statement. Please show the data.

    I could just as easily make a blanket statement that all prostate cancer results in many years of miserable pain and incontinence, followed by lengthy paralysis and infected bed sores, as happened to my grandfather. He was diagnosed in the wonderful days of no PSA screening.

    I believe we have forgotten the suffering widely metastatic prostate cancer results in. Why? Because we rarely, relatively speaking, see it anymore thanks to PSA. However, it appears that we are doomed to repeat that history with the new recommendations from the USPSTF.

    The trial lawyers will have a field day with failure to diagnose claims over the next 5-15 years. Maybe they really do protect us?

  • buzzkillerjsmith

    Sigh. Yet another article and post by persons innocent of the ecological fallacy, in which attributes of individuals are mistakenly inferred from group data.

    This is an intrinsic limitation of statistics. Wake up a statistician at a cocktail party and he’ll tell you the same. If we focus on the group, then some individuals will suffer. If we focus on individuals, then the group will suffer. This circle can’t be squared. Is that so hard to understand? I say next case.

    • glasshospital

      lovely point. but sigh back.

      the point is not to draw a conclusion but to offer counternarrative to the overabundance of tales of individuals “saved” from prostate CA with unnecessary treatment.

  • bill10526

    My friend opted for surgery after a PSA test when the test was in vogue. He became a relatively young impotent man.

    This is an excellent post. My only quibble is in its bringing in the profit motive. Doctors are human beings dedicated to helping others. I believe that those who do unnecessary mammograms and

    prostate interventions have the best interest of their patients in mind. It is hard for them to see that their well intentioned efforts are often more deleterious than helpful.

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