Nina Garcia, editor-in-chief at Elle magazine and long-time Project Runway judge, published a personal essay Thursday about her choice to undergo a preventative double mastectomy.
Garcia decided to get tested for breast cancer risk based on her family history, and in 2015 found that she did have a genetic mutation that did put her at high risk. After years of regular (what experts call ‘surveillance’) testing, she and her doctors decided to opt for the preventative surgery.
Garcia is not the only woman to take the drastic step of having a double mastectomy, partially because of celebrities being open about it. When Angelina Jolie penned a New York Times op-ed on her decision to undergo a similar preventative double mastectomy back in 2013, she caused what doctor’s termed the “Jolie effect”—the daily rates of testing for breast cancer gene mutations shot up by 64 percent after her editorial.
Prophylactic double mastectomy—a preventative surgery where both breasts are removed and sometimes reconstructed, either using implants or the patient's own tissue—has been on the rise in the United States. A 2017 study showed that the number of women who opted for the surgery more than tripled between 1998 and 2012.
Now, more than half of women with early-stage cancer in one breast consider double mastectomy, according to a 2017 report in the journal Cancer. One in eight U.S. women will develop breast cancer over the course of their lifetime (about 12.6 percent), and women are more likely to die from breast cancer than any other, except lung cancer, according to the American Cancer Society.
But experts are divided over whether or not it’s a good thing that rates for the surgery are on the rise. Experts caution that a preventative mastectomy isn’t going to be right or necessary for all patients—and in some cases, won't improve a woman’s chances of survival at all. For women with cancer in one breast, removing the other breast does not actually reduce their risk of dying from breast cancer, according to Otis Brawley, an oncology and epidemiology professor at Johns Hopkins University, who has been treating breast cancer patients for over 30 years.
“They also think that removing the breasts will give you a zero percent chance of getting breast cancer, and that’s also not true,” Brawley told the Daily Beast.“There’s always a little bit of breast tissue left behind. I’ve had eight patients that have had cancer around 10 years later after having both breasts removed.”
“We have an epidemic right now of women who have breast cancer having both breasts removed,” he added.
Deborah Axelrod, director of clinical breast surgery at NYU Langone’s Perlmutter Cancer Center, disagreed. “When people want to go for a double mastectomy, usually it’s for a reason: you’re a high risk person, a genetic counselor is involved, a surgeon… a team of doctors are helping the patient to make the best decision possible.”
For women at risk for breast cancer, removing both breasts isn’t the only option. Women at risk can opt for regular screenings, and those with existing cancerous cells can opt for a lumpectomy—removing the lump of bad tissue while leaving the rest of the breast intact.
During a lumpectomy, the surgeon removes the cancerous portion of one breast in a same-day procedure. A double mastectomy with breast reconstruction, however, takes four to seven hours of surgery, likely requiring a follow-up surgery, too. Recovery can take four to six weeks, and there can be a lot of pain and limited mobility.
“Women should consider that preventive mastectomy is an option, but not the only one,” Allison Kurian, associate director of Stanford University’s Clinical Cancer Genetics Program told the Daily Beast.“In fact, intensive surveillance incorporating annual mammogram and MRI is highly effective for early cancer detection.”
Kurian and her colleagues at Stanford developed a Decision Tool for Women with BRCA Mutations to use when discussing options, like surgery or routine screenings, with their doctors.
“It's important to remember that a preventive surgery is never an emergency and there should be no time pressure in making this decision,” she said. “I urge women considering preventive mastectomy to take all the time they need in meeting with surgical teams and weighing their options.”
Still, experts who spoke to The Daily Beast agreed that it’s ultimately up to the individual woman, her needs, and what she feels is right for her body.
“You have a substantially decreased risk of ever developing a breast cancer by doing this type of surgery,” Axelrod told The Daily Beast. “You cannot eliminate the risk, but you can substantially reduce it. People feel a great sense of relief from that, because they’re just living from test to test,” she said.
For Garcia, and other women who decide to undergo the surgery, making the decision provides a sense of closure, and taking control. “I was living in a loop of testing, every day waking up thinking: Is today the day I will get cancer?” Garcia wrote. “I no longer wanted to have these scary thoughts, and I knew the only way they would stop was to schedule the surgery. The answer was clear.”