One of the nastier aspects of breast cancer is that it doesn’t have the five-year sell-by date of some other malignancies: you’re not considered “cured” until you die of something else. Although it becomes less likely, the disease can come back eight, 10, even 20 years after treatment. I fell on the wrong side of those odds.
I had a tiny, low-grade tumor in 1997; 15 years later, in the summer of 2012, while I was simultaneously watching “Breaking Bad,” chatting with my husband and changing into my pajamas, my finger grazed a hard knot beneath my lumpectomy scar. Just as before, time seemed to stop.
The recurrence appears to have been confined to my breast and was, like the original tumor, a slow-moving form of the disease. Since the lumpectomy and radiation I had in 1997 failed, however, this time the whole breast had to go. My first question to my oncologist (after “Am I going to die?” Answer: yes, someday, but probably not of this) was whether I should have the other breast removed, just to be safe.
It turns out, I’m not alone in that concern. After a decades-long trend toward less invasive surgery, patients’ interest in removing the unaffected breast through a procedure called contralateral prophylactic mastectomy (or C.P.M., as it’s known in the trade) is skyrocketing, and not just among women like me who have been through treatment before.
According to a study published in the Journal of Clinical Oncology in 2009, among those with ductal carcinoma in situ — a non-life-threatening, “stage 0” cancer — the rates of mastectomy with C.P.M. jumped 188 percent between 1998 and 2005. Among those with early-stage invasive disease, the rates went up 150 percent between 1998 and 2003. Most of these women did not carry a genetic mutation, like the actress Angelina Jolie, that predisposes them to the disease.
Researchers I’ve spoken with have called the spike an “epidemic” and “alarming,” driven by patients’ overestimation of their actual chances of contracting a second cancer. In a 2013 study conducted by the Dana-Farber Cancer Institute in Boston, for instance, women under 40 with no increased genetic risk and disease in one breast believed that within five years, 10 out of 100 of them would develop it in the other; the actual risk is about 2 to 4 percent.
Many of those same young women underestimated the potential complications and side effects of C.P.M. Breasts don’t just screw off, like jar lids: Infections can occur, implants can break through the skin or rupture, tissue relocated from elsewhere in the body can fail. Even if all goes well, a reconstructed breast has little sensation. Mine looks swell, and is a remarkably close match to its natural counterpart, but from the inside it feels pretty much like a glued-on tennis ball.
Of course, as any cancer patient will tell you, our fear is not simply of getting cancer, it’s of dying from it. What’s a mere mammary gland when, as Amy Robach, a journalist at ABC News, told People magazine last year after her own C.P.M., “I want to be at my daughters’ graduations. I want to be at their weddings. I want to hold my grandchildren.”
Unfortunately, for most women, C.P.M. is irrelevant to making those milestones. The most comprehensive study yet, published earlier this month in the Journal of the National Cancer Institute, showed virtually no survival benefit from the procedure — less than 1 percent over 20 years.
Researchers used the Surveillance, Epidemiology, and End Results registry and other databases to model survival chances for women who opted for C.P.M. and those who did not. They took into account a woman’s age at diagnosis, the stage and biology of her original tumor, the likelihood of dying from that cancer, the risk of developing cancer in the healthy breast, and the potential of dying from a new cancer. They even tweaked the numbers, nearly doubling the risk of contracting a second cancer and exaggerating the aggressiveness of a new tumor and the effectiveness of C.P.M.
“The story didn’t change,” Todd M. Tuttle, chief of surgical oncology at the University of Minnesota and the study’s senior author, told me. “Even if we used unrealistic figures, the conclusions were still the same. There was no group with a survival benefit of even 1 percent.”
How can that be? Well, first of all, it is extremely rare for a tumor on one side to spread to the other. Cancer doesn’t just leap from breast to breast. In any case, cancer confined to the breast is not deadly. The disease becomes lethal only if it metastasizes, spreading to the bones or other organs. Cutting off the healthy breast won’t prevent the original tumor from doing that. As for developing another cancer, Dr. Tuttle said, when that does happen (and remember, it’s far less common than patients believe), 91 percent will be early-stage lesions, so more readily treatable.
There’s some indication that patients understand that, yet choose C.P.M. anyway. The majority of the young women in the Dana-Farber survey knew the procedure wouldn’t prolong life; even so, they cited enhanced survival as the reason they had undergone it.
Such contradictions aren’t unusual, according to Steven J. Katz, a professor of medicine and health management and policy at the University of Michigan, who studies medical decision making. In exam rooms, all of us — men, women, cardiovascular patients, diabetics, cancer patients — tend to react from the gut rather than the head. “The general response to any diagnosis is, we want to flee it,” Dr. Katz explained. “It’s the kind of fast-flow decision making that we’re wired to perform. And it’s very difficult at that point to put data before a patient.”
I get that. When my cancer was first diagnosed, I felt as if a humongous cockroach had been dropped onto my chest. I could barely contain the urge to bat frantically at my breast screaming, “Get it off! Get it off!” Physicians, according to Dr. Katz, need to better understand how that visceral reaction affects treatment choices. They also need to recognize the power of “anticipated regret”: how people imagine they’d feel if their illness returned and they had not done “everything” to fight it when they’d had the chance. Patients will go to extremes to restore peace of mind, even undergoing surgery that, paradoxically, won’t change the medical basis for their fear.
Mothers inevitably cite their children as motivation for radical treatment; self-sacrifice has, after all, long defined good motherhood. It seems almost primal to offer up a healthy breast — with its connotations of maternal nurturance — to fate, as a symbol of our willingness to give all we have to and for our families. It’s hard to imagine, by contrast, that someone with a basal cell carcinoma on one ear would needlessly remove the other one “just in case” or for the sake of “symmetry.”
Treatment decisions are ultimately up to the individual. But physicians can frame options and educate patients in a way that incorporates psychology as well as statistics. Beyond that, doctors are not obliged to provide treatment that is not truly necessary.
The good news is that treatment to reduce the risk of metastasis has improved over the years. Not enough, but significantly. So those of us who dream of dancing at our children’s weddings? We may yet get there. But if — when — we do, it won’t be because of C.P.M.
Peggy Orenstein is a contributing writer for The New York Times Magazine and the author, most recently, of Cinderella Ate My Daughter: Dispatches From the Front Lines of the New Girlie-Girl Culture.