False Positives Are The Tenth Circle of Hell

image from Dante’s Inferno by Giovanni Stradano

Four months of hell are officially over and I guess the news is good:  the hubster does NOT have prostate cancer.  Hooray.  Of course he never had it to begin with.  This whole, horrible journey has just been one big, fat, fake-out from the word go.   He didn’t have prostate cancer when December’s PSA number came back elevated, he didn’t have it through the roller coaster of doctor appointments, advanced testing, and useless treatments to rule-out-other-causes that followed, and he didn’t have it when they did the biopsy last week.

Nope.  The news is just great.  And it only cost us a horrible first week of initial shock and icy paralysis, four more months of chronic, low grade anxiety and fear, an early nuclear blast of antibiotics that temporarily wiped out his entire immune system whereupon a subsequent cold turned into a bad chest infection with a resulting week missed from work, a painful biopsy with risk of infection accompanied by yet another nuclear blast of antibiotics, additional missed work time for all the appointments and phone calls, a great big round of terror for his parents, a few thousand dollars from our savings, and a medium-grade case of post traumatic stress disorder for me.

(And now the doctor wants him to go on a prostate drug for the rest of his life and we’re looking at a much higher risk for future false positives.  Oh boy.  Maybe, we’ll get to do this every year.)

Honestly?  I’m not sure what to think about everything we just went through.  I feel battered and numb.  I don’t even feel grateful that the news was good because it was never bad to begin with.  Somehow it feels more like we were duped.

Look, I understand the thinking behind preventive screening and yes, certainly, I agree there’s some profound value hidden somewhere in this monster of a system we’ve created.  But I also know there’s something really, really wrong with what just happened to us.  Really wrong.  I’m not clear yet on what that is exactly, and I’m not sure how the hubster and I should change our approach with prevention going forward to decrease the chance that it will happen again.  But I do know this:

1) the U.S. has the highest rate of medical over-treatment in the world,

2) there’s broad concern about the kind of detrimental side effects from false positives like we just experienced (here’s another example affecting newborns), and

3) the science on the actual effectiveness of various screenings is still evolving which means, to a certain extent, we’re all playing the role of guinea pigs.

My instincts are screaming that the system is laced with way too much fear…far more than the situation warrants…and this fear is interfering with our group common sense.  It’s not that cancer and heart disease aren’t real threats, but this frantic, escalating fight to avoid them is eating up ever-increasing amounts of the perfectly-healthy-and-okay part of our lives.

You know what this whole thing reminds me of?  The ever-fabulous Robert Preston playing a slick, handsome, traveling salesman in  The Music Man.  Harold Hill, the con man, rolls into town one day convincing everyone they have a serious problem and he has the only solution.  He seizes on a common, reasonable parental fear and blows it up into a looming monster threatening to engulf the entire town until, predictably, everyone buys whatever it is he’s selling.

I’m not sure who exactly is playing the role of Music Man in this whole prevention/screening/false positives/over-treatment monster we’ve created, but I sure do feel like the hubster and I bit the hook.

Anyway, on a lighter note here’s a Youtube clip of Bob singing “Ya Got Trouble” in the movie.  (It’s a classic and SO much fun!)  Watch how the townspeople fall for his spiel, hook, line and sinker.  Who can blame them?  Call me a sucker but I’d buy anything from this guy.  My father-in-law (a life-long, very successful salesman for IBM) calls this the best sales training video of all time.   The first nine seconds of the clip are sort of dark but it clears up after that.  Enjoy!        

copyright Dia Osborn 2011

Update:  10/10/11  Looks like I’m not the only questioning  what’s going on.  New recommendations are being prepared.  See following article for details.

PSA Exams Should End in Men Without Cancer Symptoms, Panel Says: 

A draft report, released today by the Health and Human Services Department’s Preventive Services Task Force, recommends against so-called PSA tests for men who don’t have symptoms that are “highly suspicious for prostate cancer.”

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3 responses

  1. Hubster here…
    I suppose somewhere inside, I wanted to know when I was going to die. Kept telling myself I would “clean up my act” and work on my “bucket list” (if I only had one) if someone would just tell me when (hopefully not too soon)I will die. Maybe, I just want to make sure I get to say good bye and let Dia and the few others…know how much I appreciated them. How much I loved them.
    Somewhere in all this roller coaster experience was seeing how much I am overshadowed by the Relative…and how much I am not well prepared for my death. And…this was much harder for Dia than for me. Now, I’m thinking of the military families…maybe it is universal that it is always harder for the loved one’s than it is ever for you.
    Having said all that…it is good to say all that; helps somehow.
    Thanks!
    Love,
    Cal (alias the hubster)

  2. Whew. First of all, I’m delighted that the Hubster is just fine. Secondly, I understand…to some degree…what a shithole roller coaster you’ve both been through. My former husband went through a similar false positive scare. His situation never got quite as out of hand as it appears yours did, nevertheless, it was sheer hell.

    As was the the false positive (so to speak) that occured after my last routine boob crunch. I had to go through the waiting, the nail biting, the imaginary restructering of my future life, and the even more torturous boob crunching and money spending to discover, there was really nothing wrong.

    Good news, expensively broadcast. Are we happy for the positive outcomes or are we horrified by the false fears? I’ll be going back to the boob crunching machine again, as I’m sure Cal will return to the guy with the finger. It would be crazy not to, right?

    • The guy with the finger? Brilliant!
      I admit I never expected to feel this way upon hearing good news. Indignant instead of ecstatic. But the mental mindf–k we’re inflicting on ourselves in pursuit of prevention hit me right between the eyes with this whole thing. I personally am considering the other option of “watchful waiting” a lot more seriously after all this. We have no intention of giving up on preventive screening altogether but I don’t think we’ll jump straight from DEFCON 5 to DEFCON 1 again.

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