A Preemptive Strike Against Breast Cancer
Why more women are proactively choosing to have a double mastectomy.
Genetic testing for breast and ovarian cancer is on the rise. A 2016 study led by Sunita Desai, then a health care policy fellow at Harvard Medical School, showed a 64 percent increase in such testing in the U.S. after Jolie’s announcement.
Celebrity testimonials do tend to push certain health risks into the spotlight, but the uptick is also a reflection of testing becoming more widely available and affordable, says Sebastian, who chairs the genetics committee for the American Society of Breast Surgeons. A 2013 Supreme Court decision opened up more competition among testing labs, driving costs down and quality up.
Though online tests are now available for about $250, Sebastian says the larger labs that most breast centers use (which charge about $1,500 for a full screening) produce more reliable results.
Most insurance companies now cover genetic testing for those with certain risk factors, such as having contracted breast cancer before age 50; having three or more family members with breast cancer; having both breast and ovarian cancer in the family; and/or Ashkenazi Jewish heritage.
Choosing to have a double mastectomy may seem like a radical move, but for patients at higher risk, it alleviates the heart-stopping cycle of mammograms they fear will be their death warrants. “Once you get the BRCA diagnosis, you constantly think cancer, cancer, cancer,” says Ferrari, a federal government immigration lawyer, who lives in Arlington’s Rock Spring neighborhood with her husband and son.
Ferrari made her decision quickly after she found out in 2016 that she carried the defective gene.
“I’m a lawyer. I’m very logical. As soon as I get bad news, I act,” she says. “Once I got the diagnosis…I felt like a ticking time bomb. Do you know how hard it would be to tell my 12-year-old I have cancer?”
She had an oophorectomy to remove her ovaries and fallopian tubes just one month after the bad-news test; then the double mastectomy in February 2017.
Losing a third family member to breast cancer is what finally compelled Elizabeth (not her real name), a 49-year-old Ballston resident, to seek genetic counseling and, ultimately, a double mastectomy. Her mother and grandmother both had died young of breast cancer. When a cousin close to her age died from the disease in 2015, she got tested. Not only did she have the BRCA1 gene, but her levels of the protein CA-125 were elevated, indicating that she might have a higher risk of ovarian cancer.
“It turns out I had early-stage ovarian cancer,” says Elizabeth, a federal government employee, who is single. “I was very, very lucky because usually it’s not found at that stage because there are no symptoms.”
After a hysterectomy and chemotherapy to get rid of the ovarian cancer, she was determined to do whatever she could to avoid breast cancer, so she had a double mastectomy in October 2016.
When the post-op pathology report showed no diseased breast tissue, she says she felt a twinge of regret—that perhaps the mastectomy had been unnecessary. But she’s mostly relieved to be unburdened of the fear that had moved to the front of her consciousness. “The risk is not completely gone, but it’s so small now, whereas before it was so high,” she says. “In the end I’m glad I did it.”