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
to answer your question dia
yes Badger IS the orphan chick and friend of CJ ( now Camilla)
and YES he is due to be king of the field!!!!!
and YES!!!!!!!!! I read all my comments!
You have so eloquently stated what i’ve often felt about preventative screening. The trick is to know which ones are worth it. In my early 20’s i had an abnormal pap smear. Something about squamous cells, and i was terrified that i was minutes away from death by cancer. The place where i had taken the test wouldn’t give me info over the phone, and i had no way of getting there before they closed for a face-to-face chat. The nurse who worked with my GP, both wonderful old souls, heard the panic in my voice when i phoned up, and she got the doctor to call me back as soon as he was done seeing his patient.
I read the results to him (this was back in the dark ages when they mailed you results), and he, his voice full of compassion and calm asked quietly, “Did you happen to have sex with your boyfriend the day before this test?”
I felt embarrassed because my doctor was easily old enough to be my father’s age, and this was not a discussion i’d ever have with my father. He must have guessed my embarrassment and said, “I’m not asking to judge you, but if the answer’s yes, then there’s a very high possibility that that’s why you’ve got the reading you have. My advice would be to get retested in 6 months, just to ease your mind. If you don’t want to wait that long, then schedule one sooner and make sure you don’t have sex the night before the test.”
I thanked him, hung up, and got a follow-up test in 6 months. 100% okay.
He was right–i DID have sex with my boyfriend the night before the test. I wondered why no one had told me before about not having sex immediately before the test.
During my next physical with him, he commented that if all his patients were as healthy as i was, he’d have to find another job. “Wouldn’t that be great?” i asked, “To say, ‘All my patients are too healthy to support me.’ You’d have lines of people out the door doing anything to have you be their doctor.”
Loved “The In-Laws” clip. I had forgotten about that movie. Thanks for bringing it back to my consciousness by mentioning it.
Well, damn. I didn’t know that about pap smears, the bit about recent sexual activity causing a false positive reading. Now I’m casting my mind back over all those years and years trying to remember what I was doing the night before my own fateful positive test. Hmmmm.
There’s been a tendency among those who advocate for widespread preventive screening to discount the heavy emotional and mental toll false positives take on some women. As one of those women, I find that a wee bit offensive. I’m very glad that the costs are now starting to be analyzed as well as the benefits.
And I agree…a doctor with brilliantly healthy patients would have my loyalty!
Loved your blowhole piece about your brother’s extraordinary survival. You mentioned he was a pro surfer – what is his name?
Y’know, I’d love to tell you but I’m not sure how he’d feel about me posting his name here for the world to see. He was surfing back in the 70’s in Hawaii, but got out of it a looooong time ago. I can say that much. What’s your interest?
I knew you’d have something to say about the new PSA “recommendations.”
Where in the world do you dig up these wonderfully esoteric little bits to (Serpentine!) accompany your seriously wonderful posts?