Preventive Cancer Screenings: “Serpentine Shel! Serpentine!”

I talked about the terrible experience we had last year as the result of a false positive PSA test for the hubster in the post False Positives Are The Tenth Circle of Hell.  Since then, I’ve been following closely as the U.S. Preventive Services Task Force tackled the question of whether PSA tests do more help or harm and am am not surprised that, today, they announced the answer is harm.

There’s an opinion piece in CNN.Opinion today, by Otis W. Brawley, chief medical and scientific officer of the American Cancer Society and professor at Emory University, where he eviscerates the practice of mass screenings for PSA that has become the gold standard.  Particularly chilling is his memory of a discussion he had with the marketing executive of a major American hospital fifteen years ago who was explaining his lucrative “prostate cancer business plan.”

As he explained it, for every 1,000 men over age 50 who were screened at the mall, 145 would have an abnormal screen, and 135 would go to his hospital for evaluation. Fees collected from them would easily cover the cost of the free screening event. About 45 in that group would have cancer; the rest would be false positives.

The marketer had figured out how many men would be treated with surgery, radiation, and hormones. He had estimates of all the money the center would make from treating all 45 cancer cases. He knew how many men would be treated for urinary incontinence, and what his net profit for treating that would be. Amazingly, he even knew how many of the men would want penile prostheses surgically implanted to treat their impotence.

I asked him one question: “How many lives will you save if you screen a thousand men?” He looked at me as if I were a fool, and said, “Don’t you know? No one knows if this stuff saves lives. I can’t give you a number on that.”

I’m keenly aware and deeply grateful that the adverse effects of this test on our lives were relatively small.  An invasive and potentially dangerous biopsy is as far as it went.  There are a lot of men out there (about a million) who fared worse.  I’m also aware that with a family history of the disease, the hubster is at higher risk than the average man and a false positive on the last test doesn’t mean he’s now bullet proof.  Future PSA tests are by no means off the table but they’ll be approached with more caution and far better reasons in the future.

What makes me so angry is that the considerable risks involved were either not explained to us fully or glibly dismissed before the hubster obediently began the regimen of annual PSA testing.  Pretty much all we heard for two decades, in the media and in doctor’s offices, was the mantra-like assurance that it saves lives, this in spite of the fact that there was no direct clinical evidence to support that claim.  It blows my mind that the first clinical trial suggesting that PSA mass screening does save lives wasn’t published until 2010, and even then the trial had internal inconsistencies that make it suspect.  From Otis Brawley again:

 It showed screening saves lives in the Netherlands and Sweden, but not in five other European countries. Even the positive parts of that study did not show a considerable increase in lives saved.

It makes me wonder what really drove the push for mass screenings over the last twenty years?  The above mentioned hospital marketing executive springs to mind.

The good news is that everything we went through with the hubster’s PSA false positive broke trail for my own more considered, skeptical, research-laden approach to the mammogram alarm I received shortly thereafter.  Before the PSA fiasco I, too, would have obediently returned to the hospital for further scans and a probable biopsy (considering the incredibly vague nature of what was flagged on my original scan.)

But because we were already once burned, I dug in and started looking for more information.  I discovered that with all factors considered I’m actually in the lowest risk category for breast cancer, that an “architectural distortion density” is basically a last shotgun-scatter call for a radiologist practicing defensive medicine, that the rates of mammogram false positives range anywhere from fifty to eighty percent depending on who’s talking, and that no less than five different factors put me in the highest risk category for a false positive diagnosis.

I also learned that once a woman has one false positive, her mammograms are at much higher risk for being flagged again, and that women with false positives receive more diagnostic scans and resulting radiation exposure than women who actually have breast cancer.  Add to all that the fact that the rates of antibiotic resistance infections received in clinical settings are increasing at a clipping pace, and I decided that a biopsy should probably be avoided if at all possible.

Weighing everything I learned, I eventually realized that if I adopted a watchful waiting approach, the odds were in my favor for a good result.  I was right.  After waiting for eight months I finally went back for a follow-up mammogram that could be reasonably compared to the first one, and the new scan was deemed clean.  Nothing had changed indicating nothing was growing.  I was satisfied.

Granted, as a depressive, I still lost most of last year to the threat of slipping into another episode from all the stress and anxiety, but at least I managed to avoid most of the physically invasive fall-out.  And for last year at least, that was enough.  However, in the future I’ve decided not to pursue annual screenings unless I find a lump.  For me, the risks outweigh the benefits.

And that’s the main takeaway I’d like to offer with this post.  Each person is completely unique and there is no medical screening, procedure, or treatment out there that is a one-size-fits-all solution.  On the one hand, be skeptical.  Ask questions.  Do research.  Learn from past mistakes.  Make educated choices and, if your doctor doesn’t provide you with all the information, then go out and get it on your own.  Whether you’re confident in the continuing value of PSA tests and mammograms or not, make your own decisions based on what you feel is right for you.

But on the other hand, respect and support the directions that others are exploring, too, even if they’re different directions than you would take.  I felt mostly alone last year, trying to figure out what to do, because almost everyone I tried to talk to went straight to an expectation of the worst possible outcome.  I could see it in the back of their eyes, that dark flash of terror like they were looking at a woman who was about to be dead because she wasn’t doing what she was supposed to.

I’m not anti-preventive screening.  Far from it.  A pap smear in my twenties probably saved my life and, even with all the other chaos going on last year, the hubster and I both still got our colonoscopies.  But honestly, most of my preventive energy and attention goes into how I live because after working around the dying I finally got it, how little power we’re ever going to have where death is concerned.  I don’t want to waste the precious little time I have tilting at windmills.

I’d rather just live openly with death as my inevitable companion.  I’d prefer to amble around, and graze, and play, and explore the meadow of my life, relaxed and peaceful…and then die…rather than trying to zig zag back and forth across it (Serpentine Shel!! Serpentine!), bent over through the grass trying to hide from it all the time…and then die.

Because that’s exactly what I felt like last year; Alan Arkin trying to dodge bullets in the original The In-Laws.  And pooh on that.  I remember again the wisest thing my father…a grizzled, old warrior with a couple of gruesome wars under his belt and a vast experience of death…ever said to me:

Dia, if it’s your time to die then it’s your time to die, and nothing’s gonna save you.  But if it’s not your time to die, then it’s just not, and there’s nothing out there…nothing…that can kill you.

As a parting gift, here’s one of the funniest movie scenes of all time: the serpentine scene from The In-Laws.  Watch it and weep.

copyright Dia Osborn 2012

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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.”