‘Previvors’: The Young Women Getting Mastectomies to Prevent Breast Cancer
Carriers of the BRCA gene have a 50 percent chance of developing breast cancer at some point in their lives. Young women who are BRCA-positive are faced with a tough question: Should they have their breast tissue removed, or should they simply live...
Illustration by Vivian Shih
At age 30, Natalie* has spent the majority of her life guarding against the specter of breast cancer. She was 13 years old when her mother was first diagnosed with the disease; shortly after, her mother learned she was a carrier of BRCA 1, a gene mutation that predisposed her to breast and ovarian cancer—meaning there was a significant chance that Natalie was predisposed, too.
After nearly a decade in remission, Natalie's mother was diagnosed again. "When she first found out that she had the gene, there was always the chance that it could come back, but she didn't think these bad circumstances could really happen twice," says Natalie.
Her mother beat cancer again, but afterwards she was adamant: Natalie and her sisters had to get themselves genetically tested. She didn't want her daughters going through what she'd already endured two times. According to cancer.org, about 12 percent of women in the general population will develop breast cancer at some point during their lives, whereas women who are carriers of either the BRCA1 or BRCA2 mutation have a significantly greater likelihood, at between 45 and 65 percent. If her girls could avoid developing cancer before it had chance to grow in their bodies, Natalie's mother wanted them to know it.
On a visit home to Los Angeles for the holidays, Natalie, then 25, went to Cedars-Sinai Medical Center, where a quick cheek swab was all that was needed to determine whether she, too, was a carrier of the BRCA gene mutation; her sisters had already been tested and found negative for the gene. A few days later, she got a call at work confirming her worst fears.
"I wasn't sure what to do," she says. "Before I got the results, I had always just said, If it comes back positive, I'll do whatever I can. I was so sure that I would be emotionally detached from the entire situation... Once I found out, it wasn't as easy of a decision as I thought it was going to be."
For women who test BRCA positive, doctors recommend a prophylactic double mastectomy: removing both breasts before any signs of cancer appear, so as to reduce the risk of developing the disease by as much as 95 percent. This is, rather notably, what Angelica Jolie wrote about in the New York Times in 2013, citing her mother's death from cancer as the catalyst for her decision to safeguard her own life, at least as far as breast and ovarian cancer are concerned. (Women who are BRCA1 positive have, on average, a 39 percent chance of developing ovarian cancer, compared to the 1.3 percent chance of gene-negative women; doctors also recommend removing a women's reproductive organs as soon as she has finished having children.)
It felt like the sky was falling. I thought I was damaged.
Natalie had decided earlier that she'd get a prophylactic double mastectomy if she tested positive for BRCA. But facing the reality of the situation was more daunting than she'd expected. "I was outwardly very proactive... but behind closed doors, whether [I was talking] with my mom or with my therapist, I was really conflicted about what [the surgery] meant for me as a woman, and my femininity, and how I still had this looming risk of ovarian cancer," she says. "It felt like the sky was falling. I thought I was damaged."
Natalie is part of a growing rank of young women, dubbed breast cancer "previvors," who, upon learning that they are genetically predisposed to developing the disease, opt to reduce their chances of developing cancer by taking preventative measures, such as prophylactic mastectomies and fallopian tube and ovary removal surgery.
Lisa Schlager, the vice president of community affairs and public policy for the advocacy and resource organization Facing Our Risk of Cancer Empowered (FORCE), was 31 when she tested positive for BRCA in 1999, back before the gene had gained mainstream name recognition. "These mutations were not very well known, and there was not a lot of talk of doing preventative surgeries [in the nineties]," she recalls. "When I first went to see a breast surgeon and she suggested [prophylactic surgery], I was appalled." The idea of having a mastectomy before finding cancer in her body seemed alarmist and extreme at the time. Nowadays, Lisa explains, half of all women who test positive for BRCA1 or BRCA2 opt for the surgery, which provides more peace of mind and comes with fewer side effects than the alternatives: increased surveillance and oral chemo prevention.
"One of the most terrifying things, especially for a young woman, is Well, what am I going to look like?" says Lisa. "It's different for a 70-year-old, compared to, say, a 25 or 30-year-old." It's a decision that rips you out of the here and now, a twenty-something's luxury of living in the moment, and requires you to make a very big and not-without-consequence decision for your future self.
Natalie eventually had the surgery––a double mastectomy and full reconstruction––using every dollar she'd made as a recent college graduate. Though the procedure has eliminated her risk of developing breast cancer, Natalie isn't entirely out of the woods yet: Ovarian cancer is still a very real risk. The gene looms large in every major life choice she makes. Recently married, Natalie finds herself being asked by doctors with aggravating frequency when she plans on getting pregnant. "I get reminded constantly what age I am, and what age I need to have children, in order to get [my ovaries] out," she says. "Every time I go to the doctor, it's like, 'When are you going to start? You've gotta get them out.'"
One of the most terrifying things, especially for a young woman, is Well, what am I going to look like?
While she feels deeply that hers is a story other young women could benefit from hearing, Natalie believes that it's vital she go by a pseudonym and not disclose her true identity. "I'm not a major celebrity like Angelina Jolie, who can say things and see it as a moment of empowerment," she says. She worries that potential employers might see her as a liability and discriminate against her if they know that she still has a high risk of ovarian cancer, or that she's still planning on getting an ovariectomy at some point. (Though this is technically illegal, thanks to the Genetic Informations Nondiscrimination Act, Natalie fears that this wouldn't stop an employer from finding some other reason for terminating her her employment.)
"I'm not comfortable sharing about it on social media, because... I don't want to be seen that way, as a wounded person. I don't have that blind faith that in the goodness of sharing my story," she says. "I can't seem to get around the fear that if someone found out or discovered that about me, it might make them wonder what kind of financial liability I may place on them."
Lisa, a vocal previvor working for an organization that provides emotional support and legal aid to women like Natalie, has taken a different route, though she understands that everyone's journey is different. "People phase in and out" of the previvor support community, she says. Compartmentalizing, for many, is part of the process. Others find it helpful to speak out about their experiences; on the FORCE website, there's a section where previvors can post their own BRCA stories. Many affirm that they have no regrets whatsoever: "If I could do this all over again, I wouldn't do anything different!" wrote one 24-year-old just two days after her preventative double mastectomy procedure. "I want to be able to go on with my life without any worries and just be able to focus on my future."
For many, the biggest source of worry is the potential of passing the gene onto their children. "I have a 16-year-old daughter... we're going be thinking about her getting tested in a few years," says Lisa. "It's scary; I pray that she'll be negative... but she knows she has a 50 percent chance of carrying this mutation." Even if her daughter were to test positive tomorrow, Lisa tells me, the guidelines don't recommend that women do anything in the way of preventative surgery or chemo until age 25.
So what is a young woman going to do with that information? Lisa's daughter, who attends an International Baccalaureate high school in the DC area, has chosen for her full-year project to study the social-emotional implications of being in a family affected by hereditary breast and ovarian cancer.
"I'm a little scared for her," says Lisa, "because for the first time she's really going to be delving into this, and I worry that it's going to scare her. I'm bracing myself."
* Name has been changed