Small c: Stats and odds

My prostate cancer was caught with multiple PSA tests that weren’t out of the normal range but that were rising fast. That led to a biopsy, which found cancer in 1 of 12 samples, meaning it apparently was caught early. That led to surgery, which confirmed my malignancy but also that it was contained to the prostate.

I say, thank god science for screening. Those tests gave me information I needed to make a choice. Without the information, I wouldn’t have had the choice.

But there is a growing rumble about curtailing screening, especially for the erogenous-zone cancers of the breast and the prostate. See today’s New York Times report on the debate about the efficacy of screening to save lives.

Note that plural: lives, not a life. This isn’t about me and my cancer. This is about statistics and money. The question they’re asking: Is it worth it to find these cancers and cut them out at considerable cost if we’re not sure those cancers would have killed all those people who had surgery? But who’s to say what’s worth it?

What if I’m the one in a hundred who would die without the screening and surgery? Only one way to find out: keep the cancer in me and wait. Indeed, I had that choice — “watchful waiting,” it’s called. But without the screening, I wouldn’t have had the information to know that was cancer was in me until it spread — until it was too late. I wouldn’t have known I had a choice.

As The Times points out, part of the problem here is that researchers don’t know whether some prostate tumors are more certainly deadly than others and I’ll agree that more research is inevitably a good thing.

But this discussion is really about playing the odds with my life – and who gets to roll those dice. I want to be the one who makes this bet. I want to have the information to make it. But implicit in this debate is the idea that insurance companies want to make the bet and they want to do it for everyone at once: “Let’s curtail the screening and see what happens. OK, so one more person in a hundred dies, but we also saved huge money.” Worth it? Not if you’re that one in a hundred. Not if that one is me.

I am 55 years old and in good health with a wife and two children. Faced with the choice of not knowing whether I had cancer, I chose screening. Then faced with the choice of leaving cancer inside me because it might not kill me (that is, something else could kill me sooner than this slow-growing tumor), I chose – my wife and I chose – to get it out. In my grandfather’s case, no other disease or accident got him first; his prostate cancer killed him.

My insurance company will probably pay $25k for my surgery to take out my cancer. I am now facing some inconveniences. Worth it? I’d say it is. Will the insurance company think it’s worth it? Don’t know. Don’t care. I don’t want them making that decision. I will make it. That is the point of having control of information about my health: my information about my life. That is the point of screening.

If this were a purely economic decision, then some would die. Imagine you’re Frank Purdue and you can spend $100,000 to save a few chickens worth $100 on the market; you won’t do it. But we’re not chickens. At some level, it’s always an economic decision, I know. That is why I support government involvement in health care. Yes, I’m a free marketeer when it comes to other industries, especially the press (because I’m also a First Amendment adherent). And yes, even when government is involved, it can decide not to spend money for expensive treatments or old people (the stories we keep hearing about the U.K.) – but at least then we hold political pressure over the government. Chickens don’t vote. Patients do.

As a matter of statistics and odds, I know screening results in treatment that adds to costs. But it also saves lives – no matter whether we know precisely how many. I believe screening saved my life and I chose not to have been proven right by waiting.

So get your screenings, folks, get ‘em while they last. I’m due for another damned colonoscopy (which I’ll get after my rump feels repaired from the damage of my last surgery) and I’ll get it because they found a polyp in me (benign) last time; I won’t take the risk. You should get your PSA tested, men, and your mammograms, women. And then you can make informed decisions – informed by data and your doctors. It’s the information that gives you the choice. That information is yours.

: MORE: This discussion also leads to the work Doc Searls has been doing with vendor relationship management and personal health records. We not only need the information, we need it in a form that is usable, and we need control of it — because it is, again, our information about our lives.

: Later: Andrew Tyndall of the Tyndall Report (and a friend and fellow prostate guy) reports on TV’s reports on the story.

  • http://www.serrone.com Lou Serrone

    Prostate – Thanks for sharing the article. My PSA has been on the rise the last few years. My PSA jumped again this year to 5.6. The new Enzyme test came back positive as well. Dr. recommended a biopsy and took 12 samples.

    Lucky ……….no cancer at this time. I am very glad I got tested.

  • J Martin

    Jeff,

    Been through the same thing 18 months ago. I’m a doctor myself which may make me more prone to have it taken out. Or maybe, more inclined to run away screaming and hiding my head in the sand, but I didn’t. I was 57 then, two kids 3 and 6 to take care of so there was simply no question of not doing something.

    Anyway, I got it done using the DaVinci robot, but AFAIK the results are on par with the other methods of doing it. The cancer came out in its entirety, clean edges, and no nerve damage. Still, I initially had impotence for a month or so, but since then I’m back in business as never before. Tried Cialis twice, gave me a headache and it turns out I really don’t need them. If anything, I figure my sex life is actually improved (maybe it’s just that I enjoy life so much more now). Incontinence: totally gone, but it took half a year. My PSA is still zero, BTW.

    I realize that not everyone will be as lucky as I was when it comes to lack of side-effects, but many, if not most, will be. Seen after the fact, after the first few months, this surgery wasn’t worse than having a wisdom tooth removed. So, guys, check that PSA. I’m not a real believer in the non-screening idea, especially not in my (your) age group.

    Jeff, if you want more info privately (since I’m more than a year ahead of you on the curve), you’ve got my email adress, and you’d be so welcome.

    Cheers,

    – Martin

    • marc

      Great to read something positive rgarding impotence. I too am a doc, I had 3/3 gleason with 2 of 10 positive biopsy results. 7/20/09 Sx with Da Vinci; still incontent (although much better), but impotent…well ‘no body’s home?? I am 56, healthy..& a little concerned. Taking cialis 5mg daily.
      Looking for insight…
      marc

      • J Martin

        Marc,

        Had the same Gleason 3+3, 2 of 8 pos, free margins. Normally during a DaVinci, the surgeon will know if he came close to the nerves on one or both sides. Did you get the op report?

        Send me an email on nitteronut@mailinator.com and I’ll give you mine.

        – Martin

  • http://hodgen.com Phil Hodgen

    Hmm. Insurance co. vs. Federal gov’t. Statistics. Money. I’ll take my chances with an insurance co., thx.

    And thanks I will go get tested.

    @philiphodgen

  • JEOlson11

    Actually my life insurance company saved my life. No, that’s no joke.

    I’d applied for more insurance and the physical showed a PSA of 4.0. The company said “have it checked out.” So I did. First, an ultrasound which identified 4 masses in the prostate. Then, a biopsy which found them to be malignant and dispersed throughout the gland. My wife and I decided (1) we wanted the cancer gone and (2) we wanted to know it was all gone. Thus, surgery. I’m lucky to be in the USA (not Canada, the UK, or France) because the time from first inkling to definitive treatment was 32 days and my co-pay was $300.

    BTW, my PSA had been slowly creeping up and my then GP thought we’d wait and see. I’m glad USAA disagreed.

    • J Martin

      “I’m lucky to be in the USA (not Canada, the UK, or France)”

      I really don’t want to get into this particular debate, but that’s a very misleading statement. Personally I’m in Sweden (a perfectly commie state to your standards) and between deciding for surgery and getting it, 2-3 weeks elapsed. I chose my own surgeon, a private clinic, and paid a grand total of less than $100, except for a package of Cialis which I turned out not to need. The standard of the surgeon and equipment was also on the level of your very best institutions. Yes, I’m an MD, but I went the exact same route anyone here could go, rich or poor, working or not.

  • John Cox

    The article is about one of many problems a health aware individual faces in making decisions about his or her health. Information on health care can be biased or worse incorrect. The objectives of the information provider may not coincide with an individual’s objectives. Decisions which are good for a group are not necessarily good for an individual in that group. Unfortunately, this self evident rule is not a primary concern of either insurance companies or government agencies.
    I support your argument in favor of screening. I have had a similar, but not life threatening situation to yours. I decided on screening. This turned out to be in my best interest. I do not support, however, the notion that government involvement is a solution to making decisions of this nature. Government can act to make available more and in rare instances better information, but it can also make group decisions which are not in an individual’s best interest.
    I do not pretend to have a general solution here except that the individual, whose heath is concerned, should have options and that neither the insurance companies nor the government should limit these options. We all make decisions everyday which involve risk and return and information good and not so good. My instinct is to use the model which gave us Apple and Google and not the one which gave us AT&T.
    Thank you for sharing your experiences.

  • http://www.afge.org DaveC

    Reading a couple of doctor blogs, Jeff’s analysis of information morality and economics is flawed. I haven’t seen any indication of the insurance industry driving this issue. I do see doctors telling us to reconsider the value of PSA screening. In the case of the PSA test, the argument is that a positive test result is not a meaningful indicator of an unhealthy condition. If that is true, Jeff may be suffering from “inconveniences” for no benefit, particularly no increase in life expectancy.

    My blog sources also make a big distinction between the value of PSA tests for prostate cancer detection, and mammograms for breast cancer detection. Mammograms deliver radiation exposure which increases cancer risk. Prior to mid-90′s regulation mandating calibration of X-ray equipment, it is certain that some X-ray clinics increased mammogram patients’ cancer risk much more through radiation exposure than could have possibly been offset by early detection of cancer. The situation is much better now, which seems to correspond with increased regulation of the X-ray business. Most critically, US breast cancer mortality is falling, which appears to be correlated with regular mammograms.

    Couple doc blogs prominent on “psa test reliability:”
    http://www.cancer.org/aspx/blog/Comments.aspx?id=327
    http://skepticalob.blogspot.com/2009/10/cancer-screening-too-much-of-good-thing.html

    IMHO, this controversy highlights the tendency of a sensitively connected public becoming passionately engaged in a topic in a disappointingly naive fashion. (Just saying)

    • http://www.buzzmachine.com Jeff Jarvis

      Cancer is cancer.

  • JEOlson11

    After 37 years of marriage and well over 6000 “encounters,” I (or, rather, we) thought we’d had a good run and that LIFE was worth the risk of negative side effects. They turned out to be within the acceptable range, thank God. But the risk was worth taking in any case, IOHO.

    The risk/benefit analysis is different for each couple.

    PC makes you thankful for a strong marriage and a supportive wife (I can be sexist here!). I know men who have had to go through this without a dedicated spouse. God, but they are stronger than I am. I needed that shoulder to lean on. I still do.

    They say surviving adversity makes you stronger. Well, WE survived this adversity and it did strengthen our bond. The “silver lining,” I suppose.

    • John Evans

      You hit on the main point. Plenty of men in that age range are single because of the astronomical divorce rate and looking to date someone much younger. Others never had the 6000 encounters and just started to do well with younger women after age 40. It seems the “happily married to someone their own age crowd” has a very different value system when it comes to “acceptable risk”.

  • http://www.neverstopmarketing.com Jeremy

    Long time listener, first time caller…

    First off, I meant to comment the other day and give you a huge kudos for your openness about your medical situation. I think that is so commendable and I wish for you a fast, healthy, speed recovery.

    Here’s the thing about this issue…on a personal level, sure, you want the screening and as a “friend,” I want you to have the screening and I can understand your view that the insurance company is just trying to save money by not giving you the screening, but what about the macro level?

    Disclosure: I’ve got no affiliation with any health insurance company, yadda yadda or whatever.

    In a great book “the Epidemic of Care,” there’s an example of a cancer screening test that is $50 a pop and 99% accurate and a better test that is 99.75% accurate, but $2k a pop.

    If you are the last guy who isn’t diagnosed, yes, do the test, but should society pay an extra $195k (for 100 people)? I mean, at some point resources are limited right?

    So where do we draw the line?

    Insurance companies are obvious evil guys, but what about if the government manages it?

    I just have a hard time seeing a scenario where every single person gets every test no matter what the cost.

    Thoughts?

  • Pingback: Debate about prostate cancer screening is ‘about money, not people’ « Prostablog

  • http://www.wonderbranding.com Michele

    Jeff,
    Thanks so much for sharing your story here. Nothing gets people off their bums like an honest, authentic story from someone they respect/care about.

    My husband was diagnosed with aggressive prostate cancer in 2005 (thanks to PSA screening). With treatments, surgery, etc. He was four years clear until a return just two weeks ago. Again, information gathered thanks to screening. The first time around, the doctor recommended “watchful waiting,” but said that ultimately the decision was my husband’s – thank god for that doc, because I’m convinced that if we’d gone on his recommendation alone, my husband wouldn’t be here today.

    All to say that everyone deserves choices and the peace of mind that they have healthcare options – including care for every American.

  • Judge Crater

    Jeff — a serious question. Would you have had the surgery if you needed to spend the $25,000 out of pocket? It would be a financial hit, I’m sure, but I would guess have a net worth where it would be possible if required.
    if you needed to lay out your own cash directly (rather than washed through years of insurance premiums), would that affect your thinking?

    • http://www.buzzmachine.com Jeff Jarvis

      As I said to a later commenter, I would have paid. Car or cancer? Cancer loses.

      • JEOlson11

        I would have paid. So, I believe, would you.

        I did give it a moment’s thought. Amortized over my expected life span with surgery, it comes out to about $100 per month. Scratch one dinner out at a nice restaurant.

  • http://www.pmorganbrown.com Morgan

    As a father of a son who was born prematurely and required intensive care for months at the cost $1 million+ to insurers I totally agree with your sentiments. Human lives are invaluable in my opinion. We should decide and control the health decisions we make. Not an actuary, not a committee, not an accountant looking at a P&L. Were the millions spent on saving my son’s life worth it? Without a doubt. Is the $25k spent on your surgery worth it? Absolutely. I’ll gladly pay in to let other people have the same opportunity as us.

    • Andy Freeman

      > Human lives are invaluable in my opinion.

      Fair enough.

      Of course, that means that you’ll have no objection to giving every dime that you have to pay for someone’s medical care.

      Yes, your money. After all, “invaluable” is your opinion.

      Of course, that does mean that you’ll probably be unable to pay for certain care that you might like, but that’s how these things go. (There’s always someone who is unable to do something for themselves because their money was taken to provide that same thing for someone else.)

  • Judge Crater

    Morgan, sincerest best wishes regarding your son. I can’t express how much I mean that.

    My question is not “is the $25k spent on your surgery worth it?”

    It is, would it be worth it to you (Jeff) if you had to write the check yourself? Would you weigh the choices (surgery vs. watchful weighting) differently? I ask it because it’s an interesting amount. I presume Jeff could afford it, but it would be an actual financial sacrifice.

    At least that would roughly be my situation, if I had to make that choice. And it makes the expense more “real” if you have to think about paying it directly, and not through an insurance proxy.

    • http://www.buzzmachine.com Jeff Jarvis

      I would have paid the money. No question.

  • http://sputnik.pl/ Michal Tatarynowicz

    I live in Poland, and almost all medicine we’ve had since the 2nd World War was socialized. Since getting rid of the communist regime we’ve been working on making our system more market-driven. There are without any doubt certain drawbacks to both models.

    Recently I’ve been listening to the debate in US, wondering what the perfect health care system would look like. I’m quite certain that a completely free market approach will never work properly, since the health of oneself and his loved ones is not something one can do without.

    All in all, I think most health care is a form of disaster relief and should be run by the government.

  • http://www.tyndallreport.com Andrew Tyndall

    What if I’m the one in a hundred who would die without the screening and surgery?

    Jarvis, you are way off on your odds here. Not only would a patient be ill advised to undergo such major surgery if there were 99% odds that it was unnecessary to save his life. No surgeon could conscientiously perform the surgery. It would be a gross violation of the Hippocratic Oath to do the “harm” of surgery on 99 non-terminal men in the hope of saving the life of the hundredth.

    I was told, as I am sure you were, that a prostate cancer discovered in a man under 60 indicates surgery for two reasons. First, his life expectancy is otherwise long enough that the tumor would have time to kill him; second, that tumors in younger men grow more quickly than those in older men. I was told that the odds of the tumor killing me untreated were very short indeed, nowhere near 1 in 100, considerably greater than 50%.

    Someone who had the same PSA levels at the age of 80 would never be a candidate for surgery.

    The point is that any screening is only appropriate if its results are actionable. The worry at the American Cancer Society is that doctors and patients are being misled into believing that action is warranted in response to a positive PSA test merely by virtue of the results being available. The contemporary fee-for-service healthcare industry has a built-in incentive for tests to be performed and for procedures to be followed as a consequence. The ACS is wise to warn that the benefits of PSA screening are exaggerated.

    Anyway, this is how the network nightly newscasts — ABC here and NBC here — covered the fallout from the Times coverage.

    • http://www.buzzmachine.com Jeff Jarvis

      Andrew,
      I used 1/100 colloquially; I shouldn’t have. And, yes, as I pointed out, my age is a key factor. What I”m saying is that I can’t know what my odds are.
      j

  • http://www.tyndallreport.com Andrew Tyndall

    Jeff –

    Something has been nagging at me about your argument for a couple of days. I think it is this…

    … this discussion is really about playing the odds with my life – and who gets to roll those dice. I want to be the one who makes this bet.

    I understand your point that its is only screening that alerts you to the fact that a bet has to be made (and you want to make sure you make that bet not your insurance company). But how did you know what the odds were? Surely, the only way you knew was thanks to public health epidemiologists. They did the research in blind randomized tests to find out what the risks and benefits of treatment are for various PSA levels for men of various ages.

    Those blind randomized tests must have been conducted by using the very protocols that you condemn: by taking the choice away from individual men over whether to have surgery; assigning some to choice A and others to choice B; and then tracking their long-term prognoses.

    So your ability — and mine too — to “roll those dice,” as you put it, stands on the shoulders of men who had scientists roll the dice for them. Your attempt to draw the bright line between “me and my cancer” on the one hand and “statistics and money” on the other does not stand scrutiny. If you do not know the statistics, then you cannot place the wager.

    • http://www.buzzmachine.com Jeff Jarvis

      Andrew,
      Again, it’s choice. People in those tests make a choice to be in them. Some blind, controlled drug tests are cut short because real results are found.
      The stories say that they’re not sure all prostate cancers will kill (or how long will it take them to kill?). I’m rolling the dice with unknown odds. So I prefer to take the safe bet.

      • http://www.tyndallreport.com Andrew Tyndall

        No, Jeff, My point is that the odds are not “unknown.” Your particular prognosis was unknown but the probabilities are known. That knowledge is the basis on which you made the bet you did. Those probabilities are calculated by a process that treats patients as statistics not as individuals. We should applaud that process — and those patients going before us, who decided to give up their individual choices for the sake of the public health.

        • http://www.buzzmachine.com Jeff Jarvis

          Andrew,
          Yes, of course, I am grateful to all those who sacrifice for the health of all. I’m not talking about their choice – and it is a choice. I’m talking about the plain patient, aside from research, and his ability to have the knowledge that gives him choice.

  • GJ

    Let me join the chorus and thank you for sharing this very personal story with a bunch of strangers.

    And speaking of the plain patient and his ability to have the knowledge that gives him choice, would you tell us what the total cost of the surgery was?

    When you say the “insurance company will probably pay $25k,” one is left wondering what was left unsaid. Those of us who pay our own way would very much appreciate knowing the rest of the story. That type of information is not easy to obtain online.

    Thanks in advance!

    • http://www.buzzmachine.com Jeff Jarvis

      I think my figure is off. I’ll let you know when/if I figure it out.

  • http://www.valimedix.com Debbie Denison

    Screening is the key to success when it comes to treatment and long term prognosis. I absolutely agree with you Jeff, get yourself tested, men and women. Prostate, breast cancer, pap smears, anything that can be caught early enough can normally be treated. Thank you for sharing your story.

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  • http://www.docorion.org tamoroso

    Honestly, Jeff, while I am glad your outcome was good, you’re wrong on this one IMO. And I think all the doctors who wrote to you are wrong as well. (And I am a doctor also, so I can say that with the same authority they have).

    Because the math you’re using is incomplete. Screening doesn’t just catch people with disease; it also tells some people they have disease when they don’t. These people then get painful, dangerous (not very dangerous, but not as safe as not having it done) and expensive additional testing, for no good reason. Some of these people who did not need to be screened will have complications, and some will, die when they need not have.

    And furthermore, screening misses some people who have disease, but the screening isn’t good enough to tell them they have it. These people go along with their lives, possibly deferring further screening (because hey, they got screened once and it was fine, right?), until they get symptoms, and are then blindsided by a diagnosis they thought they had dodged.

    Screening tests need to be *really, really good*, and the outcome of screening needs to be *very* much better than not screening. And the science on PSA testing is that it just isn’t good enough. It misses too many people who have cancer, and tells too many people they have cancer when they don’t. And (as you accurately note), the consequences of missing some of these cancers are not particularly high, since most men will die *with* these cancers, rather than *of* them.

    So again-I’m glad you had a good outcome. A relative recently told me his PSA was rising; I told him to get the ultrasound, but to think hard about whether to have biopsies or surgery (he is quite a bit older than you, to be fair), as his outcome with and without surgery is probably similar (he’s much more likely to die of something else). He hasn’t decided what to do yet. For myself-I am not having my PSA screened. I’ll keep an eye on the science, and if it gets better I will have whatever screening is better, but PSA is not ready for prime time.

    • http://www.buzzmachine.com Jeff Jarvis

      You miss my point: Screening caught ME. I’m not a statistic.

      • Hey

        Jeff, you’re acting like the poster boy of why no journalist can ever be trusted.

        The plural of anecdote is not data. The plural of anecdote is not data. The plural of anecdote is not data.

        Please write that on the board 300 times.

        You’re also acting out the interesting psychodynamics of loss aversion – we pay far over the odds to avoid a loss, whether its for insurance or taking on the risk of medical procedures.

        Good doctors want you to understand that all procedures have risks, even minor, routine ones. Which is why I had a sit down with a doc over whether I wanted a CT given the cancer risk – I really, really wanted a CT and wasn’t in the right state of mind to give informed consent anyways (extreme acute pain that we were trying to nail down), but CTs are bog standard these days. I also almost died 1 day after having an abscessed ingrown hair treated, which is one of the most minor things a doctor will do to you with a knife.

        To the patient (especially one with the big C), you’re going to die if this thing isn’t removed, and the low risks are meaningless. But you really aren’t going to die – great new research came out last week highlighting tumors that spontaneously shrivel away (study focused on testicular cancer). Plus, as you mentioned, the findings that nearly everyone dies with cancer, but not of cancer. Our screening ability has raced ahead of our ability to make predictions. We are very, very close to the line of killing more people with excessive treatment than we are saving with screenings. This is even more so in Breast Cancer thanks to increased radiation doses.

        The worst thing to do to health care and intelligent, personal decisions is to let the government have a monopoly on it. Monday had The Globe and Mail highlighting women who’d been condemned to death thanks to the revocation of coverage of multiple drug therapies by the Ontario Government http://www.theglobeandmail.com/news/national/mds-press-ontario-to-fund-rare-disease-therapy/article1347770/

        • http://www.buzzmachine.com Jeff Jarvis

          You take the risks you want to with your life, I will decide mine. And I’ll do with the the guts to use my name.

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  • t

    I’m 7 months post DaVinci ( at 58)in New England. I wish that recovery & rehab were steady & predicatable, but maybe soon. Post op support & rehab seem to be good here- I hope that’s true everywhere. Recommendations, in addition to viagra, include regular use of an injectable “triple p” gel and a vacuum pump to promote circulation & stretching of those sensitive parts, to keep things ready for the return of nerve function.
    Neither one is much fun, and I don’t know if they are proven to be best. But they don’t seem likely to cause harm, and certainly worthwhile if they turn out to be effective. True of almost anything? Seem to be progressing well for me. Perhaps worth checking with your doctor. All the best to all of us.

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    is well organized, thank you for enlightening comments.

  • Maurine Bagby

    LOL, I think we’ve all heard that one Dawn. It’s hard not to keep moving on to something else but I think for anyone wanting to create a full-time income, they really needed to stick to one thing until it works.