I have never had a mammogram. I’m almost 50 — nearly a decade into the age when the screening is recommended by the American Cancer Society. I’m college educated, adequately insured. And I am the bane of my health care providers. Once, my midwife went so far as to request that I never speak of my decision in any space where other patients might hear.
This week, I was vindicated. On Tuesday, a Canadian study, one of the largest ever done on mammograms, was published in the British Medical Journal. The study found that mammograms did not reduce breast cancer deaths in women around my age compared to physical exams, and that one in five women screened was overdiagnosed, possibly leading to unnecessary surgery or radiation.
It seems astonishing, but it reinforced what smaller studies had told me, as someone with no family history of breast cancer: that getting a mammogram was unlikely to affect my chances of dying from the disease. What it would do is increase the probability of my mistakenly becoming a breast-cancer patient.
When I was in my late 30s, my midwife suggested I get a baseline mammogram, followed by annual screenings. I was ready to do it. I assumed my research into it would be mere due diligence.
This kind of research was a new habit of mine, born of necessity. When our son was 18 months old, he developed a devastating tumor on his spinal cord. We waited for the doctors to tell us what to do, but the diagnoses and suggestions were scattered — it’s cancer, it’s not cancer, it’s half cancerous, we need radiation, we don’t need radiation, it’s life-threatening, it’s benign. We opted for surgery, and it was deemed a success. Doctors waved us out of the hospital with balloons. But a few weeks later, we were urgently summoned back. The oncologists had decided that he needed another operation to make sure they had removed all of the tumor.
It made me realize that, despite the surety with which the medical professionals had presented things, it was all a best guess based on the available information. So I started doing my own research, to try to make the best decisions for our baby. I soon began to wonder why I didn’t study my own health care decisions as thoroughly as I did his.
So I started looking into mammograms. The more I found, the more I doubted. I was stunned by a 2001 Cochrane review — considered to be the gold standard for evidence-based studies — that concluded, “The currently available reliable evidence has not shown a survival benefit of mass screening for breast cancer.” Everywhere, I saw pink ribbons and the message that mammograms save lives. But no matter how many times I read the numbers, I wasn’t convinced that I should get one.
Over the years, my choice has spurred concern from health care practitioners as well as the person who is most worried about my health: my mother, who, in her 80s, is still a religious mammogrammer. She has described how nerve-racking the post-procedure waiting room is — you shiver in the cooled air until you’re sent home or get the ominous “The doctor needs to talk to you.” One day a few years ago, she was the one called to stay. They had found something “suspicious,” and she felt her world falling apart.
When my mother told me this, the first thing I thought of was the high rates of over- and misdiagnoses, and I told her so. But she still spent over a month in a panic — waiting for the follow-up, which then was somehow done incorrectly and had to be repeated one more time. Finally, multiple painful mammograms later, they concluded it had all been a mistake. And oddly, the false urgency has continued: She has been getting notices reminding her to make an appointment for another mammogram in six months because she is now “high-risk.”
Patients want reassurances. We feel we have to test, so we can find out if we’re sick. We rarely consider that the test itself might make us sick — perhaps through repeated exposure to radiation — or that there are health advantages for the nontester like me, who gains time, sheds stress and potentially dodges the harm of a false positive or unnecessary treatment.
This isn’t the answer for everyone. But as parents and patients, we have no choice but to try to become conversant in medicine, even if it makes some doctors bristle. Our medical experts are an invaluable resource, but in the end, it’s up to each of us how we want to proceed.
I now have a new primary care physician who still refers me to the mammography center, but when he hands me the slip, he smiles and says, “But I suspect you won’t do it,” and I get the feeling he respects my reasons. I wonder if, some day in the not too distant future, he’ll say, “This test actually seems to have more risks than rewards,” and stop handing out that slip at all.
Marie Myung-Ok Lee teaches writing at Columbia and is working on a novel about the future of medicine.