Your Medical Mind_ How to Decide What Is Right for You - Jerome Groopman [55]
Julie felt relieved that “I never got to that point, I never felt like there were five yellow brick roads.” She was able to lessen her decisional conflict by doing everything that might help improve the chance for cure, despite the impact on her body. Like Steven Baum, she felt that she had gone through her process and didn’t need to look back.
Julie Brody is like many other women who are first diagnosed with breast cancer and later discover they carry a BRCA mutation. In one study, 52 percent of such women chose a bilateral or “double” mastectomy after learning that they carried the mutated gene. But what about women who have the BRCA mutation but don’t have cancer?
Sara Rosen, a thirty-eight-year-old pastry chef also living on the West Coast, had several aunts and cousins with breast cancer. She agonized for many years before deciding to be tested for the BRCA mutation. “I wasn’t sure what I would do with the information,” she told us. And she was concerned about the burden it might put on her two teenage daughters. But after Sara’s younger sister was diagnosed with breast cancer and was found to be positive for a BRCA1 mutation, she spoke to a genetic counselor and then decided to be tested. Sara’s test was positive, and she learned that the likelihood that she would develop breast cancer in the future was between 55 and 85 percent. Her risk for ovarian cancer was 36 to 63 percent. Sara consulted with several oncologists and read about her options on the Internet. Her mammogram, MRI scan, CA-125 blood test for ovarian cancer, and pelvic ultrasound were all normal. Since she wasn’t planning to have more children, she decided to have her ovaries removed. But Sara declined breast surgery, choosing to take tamoxifen instead.
About half of women who carry a BRCA mutation with a normal pelvic ultrasound and blood tests are like Sara Rosen and choose to have their ovaries removed. But Sara is like the vast majority of women with BRCA who do not have a diagnosis of breast cancer—they don’t choose mastectomy. In one study, only 3 percent of such women chose bilateral mastectomy within the first year of learning that they carried a BRCA mutation.
A drastic intervention like removing both breasts and both ovaries to prevent a disease you don’t have and may never get presents the extreme of decisional conflict and loss aversion. The losses are many and profound. A woman faces major surgery, with the attendant risks of pain, disfigurement, scarring, infection, and bleeding. Further, losing her breasts and ovaries challenges a woman’s self-image. The immediate onset of menopausal symptoms after their ovaries are removed makes many women feel miserable, with hot flashes that disrupt sleep, exhaustion, mood swings, depression, and impaired sexual function. Although many women adapt over time, the adaptation process may be lengthy and incomplete. These were the thoughts in Sara’s mind.
Two years later, Sara’s younger sister died of metastatic breast cancer. “I could not escape the thought that I would be next,” Sara told us. “Availability,” a dramatic event that deeply influences you, proved a powerful force in changing Sara’s thinking and overcoming loss aversion. She decided to undergo bilateral mastectomy. Fortunately, no breast cancer was found. Sara was relieved and told us, “I believe I made the right decision, but it hasn’t been easy. Not easy at all.”
Everyone knows what I’ve been through,” Julie told us, “and now I can help others.” She had shared the details of her illness with numerous friends and all her co-workers. Julie believed that sharing her experiences lightened the burden of her arduous treatment. Now she has found herself on other people’s Rolodexes: “I’m getting so many calls for advice.” She feels, not surprisingly, that she is “educated” about cancer. “I try to point out to the person who is going through cancer how you