Almost two years ago, a woman who is dear to me announced she would undergo prophylactic surgery. Her decision to remove her ovaries and fallopian tubes was painstaking; as a mother of young children, she didn’t relish the thought of slipping into early menopause, never mind the physical stress of surgery or disruption of her family life. Yet I felt mostly relief.
Ever since this woman had been identified as a carrier of the BRCA1 genetic mutation, I’d been hoping she’d consider this option. After all, what better way to dupe the cancer devil that had preyed upon her mother and grandmother? After all, women who carry BRCA mutations, which are much more prevalent in Jews of Ashkenazi descent than in the general population, have a greatly increased likelihood of developing ovarian or breast cancer during their lifetimes. The procedure would greatly diminish that risk.
There’s that word I didn’t focus on. Diminish.
To diminish means to shrink or to minimize; it does not mean to eradicate. And last week this woman — and those who love her — awoke to a nightmare that doesn’t fade with the morning sun. We learned that the cancer demon had navigated its way around that prophylactic procedure, and registered its unwanted presence in the protective lining of her abdomen. She was diagnosed with primary peritoneal cancer. It is a disease that is related to, and behaves like, ovarian cancer, and is treated in the same manner.
“This is something that is known in the hereditary cancer community,” says Sue Friedman, referring to the slim but certain risk that remains even after women undergo these invasive “prophylactic” procedures. As the executive director and the founder of the nonprofit known as FORCE, or Facing Our Risk Empowered, Friedman devotes much of her time to supporting and educating those with hereditary breast and ovarian cancer. Friedman says she’s contacted by several women each year confronting a similar scenario.
“It’s awful to be diagnosed with cancer at any point,” Friedman says, “but when you have done everything in your power you can do, it’s just devastating.”
Understandably, those who work with this community often emphasize the brighter side, the advances made since the BRCA genetic mutations were identified in the mid-1990s. They reel off statistics that indicate that these precautionary surgeries reduce the incidence of ovarian cancer by as much as 80 to 90 percent, and can slice the chance of developing breast cancer in half.
At times, however, the optimistic language seems to overstate the control we have over our genetic destinies.
Douglas Levine, a gynecologist-oncologist at Memorial Sloan Kettering, says: “If I do 10 of these procedures, I know I’m saving someone’s life.” Levine, who says he has performed more than 100 salpingo-oophorectomies in the last two years, often using a 2-cm incision in the belly button to remove the ovaries and fallopian tubes, warns that we “don’t want to muddy the message” by spotlighting the 2 percent of patients who contract cancer even after the procedure (others put that figure at 4 percent).
But Levine also notes that in his hospital’s publications, Memorial Sloan Kettering prefers the term “risk-reducing” surgeries. The word prophylactic seems too rosy, implying that the operations will eliminate the chance of developing cancer.
Patients tend to respond like the Los Angeles woman I interviewed. That woman, who didn’t want her name used, swung into action after she discovered that she carried the BRCA-1 mutation. At the age of 48, she not only removed her ovaries, uterus and fallopian tubes, but also scheduled a mastectomy. She knew about the residual risk of cancer, but dismissed it. She thought, “Oh man, that’s never going to happen to me.”
Last year, at the age of 52, when she learned that the disease had cropped up in her peritoneal lining, she says, “I was pretty much in shock. Life just changes in a second.” The Los Angeles woman, whose cancer was treated at Cedars-Sinai, subsequently arranged her own informational tour of every top-notch cancer institution in the country. She wanted to learn about new treatments in case of a future recurrence. Now though? She’s healthy, but furious about what she sees as inadequate funding of research for ovarian cancer.
As for the woman I first wrote about, she’s recovering from surgery, back home with its creature comforts. And for me, it is a familiar world but strange and horrible too — in the way of a frightening dream from which I can’t wait to awaken. n
Elicia Brown’s column appears the second week of the month. E-mail her at firstname.lastname@example.org.