Schroedinger’s Breast: Welcome to Mammogram-O-Rama
When the mammogram center called the week after my scan, I knew it was not good news. Those folks don’t ring you up to say hi.
“Your scan shows calcifications,” the woman said. “We need you to come in to see if we can resolve your case. We’d like you to wait after this mammogram and talk with the radiologist.”
I scheduled the scan for the next week and spent the intervening days in true bionerd fashion, reading everything I could about breast calcifications and preparing a list of questions for the doctor.
Why didn’t I just wait to hear the word from on high? Trusting doctors is not my style. I came by that skepticism the hard way. When I was pregnant way back in the eighties, the obstetrician misdiagnosed my twin pregnancy as a singleton, decided my menstrual dates were wrong, changed the due date without ordering a sonogram, and induced my boys two months early. My son who has cerebral palsy was the undiagnosed and unmonitored second-born twin. I went back to school when my boys were little and earned a graduate degree in biology, in part to launch my biotech career, and in part so that I could navigate medical spaces with greater skill. And now that I’m seventy, at the nexus of medical sexism and medical ageism, that training does come in handy.
When I hit the medical journals before my second mammogram, the first thing I learned was that women who use estrogen-only HRT (as I do) have an increased chance of an abnormal mammogram and a decreased chance of breast cancer. A report from Cancer Connect documented there was no statistically significant difference in the number of invasive breast cancers between estrogen-only HRT users and a control group, despite the higher mammogram recall rate. So women like me have an increased rate of false positive test results.
Another report showed that for women overall, there is a high rate of overdiagnosis and overtreatment for breast cancer based on mammography, including unnecessary biopsy and surgery. Welcome to Mammogram-O-Rama, your conveyer belt to a potentially unnecessary mastectomy.
But wait—if the mammogram is an imperfect tool, surely a biopsy is definitive? Alas, no. A study in the Journal of the American Medical Association showed that when a trained clinician and an expert pathologist look at the same breast tissue sample, they often do not come to the same conclusion. For invasive cancer the concordance was high, but for atypical cells, the pathologists reached the same conclusion less than half the time—with a bias toward a higher risk classification. So the biopsy stage of Mammogram-O-Rama can lead to unnecessary surgery—the next stop on the conveyer belt.
Over half of women in our seventies have calcifications in our breasts. For women who have calcifications in a linear pattern, as mine are, the concern is that these may be an early sign of ductal carcinoma in situ (DCIS), which is a Stage 0, typically noninvasive cancer that usually will not develop into an invasive form in a woman’s lifetime. An article in the British Journal of Cancer called “To Treat or Not to Treat?” put it this way: “Difficulty in discerning harmless lesions from potentially invasive ones can lead to overtreatment of this condition in many patients.” The report went on to say “Despite being pre- or non-invasive, DCIS is often regarded as an early form of (Stage 0) breast cancer. Therefore, conventional management includes mastectomy or breast-conserving surgery supplemented with radiotherapy; in some countries, adjuvant endocrine therapy is added. Regrettably, current therapeutic approaches result in overtreatment of some women. Women with DCIS are labelled as ‘cancer patients’, with concomitant anxiety and negative impact on their lives, despite the fact that most DCIS lesions will probably never progress to invasive breast cancer.”
The entire conveyor belt, from overdiagnosis to overtreatment, is summarized by a diagram in a Five Thirty Eight article, taken from U.S. Preventive Services Task Force (USPTF) data. In sum, the number of breast cancer deaths averted by mammogram is likely smaller than the number of surgeries in which harmless cancers are “cured.” And on top of that, for DCIS in particular, treatment does not statistically decrease mortality.
As a side note, the woman who wrote the Five Thirty Eight article, who has studied this data extensively, has decided never to have a mammogram.
I took this data to my second round mammogram, which was scheduled, not at the mammogram center, but at a large university cancer hospital. After the scans, wearing nothing but a patient arm band and a flimsy gown, I perched in the “Specialized Waiting Area” for an hour. I imagined the radiologist as a large man in a white coat, looming over me and insisting that I have a biopsy, whether I wanted one or not. But the radiologist I actually saw, Dr. Titt (not her real name), was a tiny woman with big glasses. Not intimidating at all, even though her opening line was, “I’ve read your films and I recommend a biopsy.”
I launched into my concerns about false positive mammograms, discrepant interpretations of biopsies, and surgery on ductal carcinomas that would never become invasive in a woman’s lifetime.
“True,” she said. “If it were a mass, it would be clear that it should be treated. For calcifications like yours, it’s less clear. But the problem is, how to know which ones will become invasive? I just had a patient whose DCIS did.”
Exactly. How do you know you won’t be that patient? But on the other hand, if you are overdiagnosed and overtreated, how does that experience of mastectomy and radiation affect your quality of life?
“What’s the harm in waiting six months and repeating the scan to look for changes?” I asked, thinking of an article that discussed moving to the “watchful waiting” model: “We can learn from the prostate cancer experience with active surveillance to recognize the safety of following more indolent disease and apply that to the setting of DCIS, which is not invasive cancer.”
Dr. Titt shrugged. “That’s six months for the cancer to grow—if it’s going to grow.”
She gave me the paperwork to schedule a biopsy. “This is still my recommendation. Call this number if you change your mind.”
I doubt that I will change course; the statistics are on my side. In six months I expect to see no change, and if I there is a problem, I am confident that six-months-from-now me will handle it. And by then there will be more research on molecular markers that indicate the risk level of a DCIS.
On the way home from the cancer hospital, I thought about one of my favorite foremothers, Barbara Ehrenreich, who published her book Natural Causes when she was 76. The prolific author of such great works as Nickel and Dimed decided that for her there would be no more cancer screenings, no more lectures about lifestyle, no more medical examinations. She wrote, “Not only do I reject the torment of a medicalized death, but I refuse to accept a medicalized life.” She died of a stroke five years later. I hope to live a good bit longer than she did (the average female lifespan in my family is 96). But I like the concept of just saying no to medical intervention when it makes good sense.
So here we are for now, with Schrodinger’s Breast. And if you aren’t on my mailing list, do sign up for blogs and newsletters. I guarantee an update when that six month scan rolls around.
I leave you with this disclaimer: I am not a doctor and cannot advise you about your health decisions. What I can say is this: You and your doctor are partners in health. They know their medicine, and you know your body; you’ve lived in it for a long time. Learn what you can about your health issues, ask questions, and remember that decisions about your health are yours to make.
I typically publish a guest blog by a Woman of a Certain Age on the tenth of each month. To be considered, please consult the guidelines before you submit your essay. Pieces by women authors of new or upcoming books are most welcome. And I especially encourage women of color, women with disabilities, women of size, and queer women to send essays.