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