How to Live With the Cancer You May Never Get

The waiting game is a different experience for every woman with a BRCA gene mutation

Illustration: Cha Pornea

Three years ago, Mary Margaret, 31, from Vermont, learned that her BRCA gene has a mutation that may well one day cause cancer. “I’m not actually sick. I may not ever be sick,” she says. “I’ve just been told I might get something eventually.”

It’s a strange experience, to be told you’re fine — but for how long? “It felt like I was grieving something, but what do I have to show for it?” she says.

Margaret is a previvor: She knows she’s statistically likely to get cancer, but she’s never had it, and could possibly never get it. “Being at this point in the journey is very different from actual illness,” she says.

Mutations of the BRCA genes are inherited — parents have a 50% chance to pass it on — and many people discover they have it when a family cancer cluster triggers testing: Margaret and her sister and brother all got tested when their mother was diagnosed with breast cancer. A mutation of the BRCA1 gene, according to the National Cancer Institute, gives carriers a 72% chance of developing breast cancer and a 44% chance of ovarian cancer, whereas BRCA2 triggers a 69% chance of breast cancer and a 17% chance of ovarian cancer. About one in 400 people have a BRCA mutation.

The conversation around BRCA mutations is usually about just that: cancer. But Margaret and others like her find themselves in a slightly different category: They know they have a rogue gene, but they also know that they may never get cancer and could end up spending their whole lives worrying about nothing.

Preventative surgery looms large for BRCA carriers, who are advised to consider double mastectomies and oophorectomies to reduce their breast and ovarian cancer risks. It’s a lot to take in: “I haven’t made a plan to have surgery yet. I’m still using my equipment,” Margaret laughs — she has a baby and wants to have another. “Let me sit back for a minute, give it some time!”

Although BRCA cancers are often more aggressive and happen when people are younger, Margaret’s age means she can afford to wait — although 40% of breast cancers in women under 35 are hereditary, the average age for BRCA carriers to get it is 40–50. Still, her BRCA status is a constant companion: “Between screenings and follow-ups, I have over 10 appointments a year. It’s a lot. I worry every time what life would look like if they found something.”

Nikki McCoy, 39, from Washington, has a tattoo documenting her previvor status: DNA strands made up of two ribbons, pink for breast and teal for ovarian. Life changed quickly for McCoy after learning her BRCA status: She had her gynecological procedure just four months later. “I knew I wanted to do that right away because screening is so poor for ovarian cancer.”

She’s currently recovering from a preventative mastectomy and reconstruction. “I’m a little tender and tired, but I’m doing pretty good,” she says, adding that the recovery is less severe than the prophylactic hysterectomy and removal of her ovaries and fallopian tubes that she underwent a year ago.

McCoy is very well informed, but she says she had to dig for a lot of the information herself: “I had to advocate to keep my cervix, because many surgeons lump the uterus and cervix together. That procedure was a huge loss and for me, it meant having at least some control,” she says. “It was really important to me to feel like I knew what I was doing.”

It was a fast but fraught decision: Removing the ovaries triggers surgical menopause, and McCoy is on hormone replacement therapy (HRT). “Menopause was a really intense part of this,” says McCoy, who had many conversations with her doctor about HRT. The therapy can be safe even with BRCA, but some types of HRT are linked to breast cancer risk and there’s a lack of general medical consensus around what’s the best approach. For this reason, Joy Larsen Haidle, an expert in hereditary cancer syndromes at the National Society of Genetics Counselors (NSGC), says women should have “a very intentional conversation with their doctors up front” about surgical menopause and symptom relief. “It’s really hard to have that conversation later, if you’re not feeling like yourself,” says Larsen Haidle. “It’s one thing to give someone quantity of life, but you have to find quality, too.”

“I struggled a lot with that decision. I thought, ‘I might never get cancer. I could come out of surgery less healthy than I am now.’”

When the risk of cancer is so high, it may seem like a straightforward decision to remove organs you can live without, at least if you’re finished having children. But even for women who feel certain about their decision, it’s a big deal: “I treated the surgery as a big life event,” says McCoy, who traveled to Texas for her mastectomy. “Traveling gave me more time to be reflective. My husband and I spent all day prior to my surgery in the San Antonio Botanical Garden. We saw every kind of cactus I ever could have imagined. It was really powerful.”

Surgery can also feel like a big loss. For some women, losing their breasts can feel like a cut to their self-image. “I struggled a lot with that decision,” says Lisa Kirsch, 49, from London, U.K., who was diagnosed BRCA positive six years ago “I thought, ‘I might never get cancer. I could come out of surgery less healthy than I am now.’”

Kirsch ended up having the surgery after watching a friend with BRCA go through cancer and not survive. But the aftermath wasn’t necessarily full of relief. Kirsch found that she couldn’t just go back to the way things were before — the experience had changed her outlook on what was most important to her: “I did all this surgery to make sure I’d be around for my son, and yet I never was because [I worked so much],” she says. “I had this moment of thinking, ‘What is it all for?’ I wanted to be there for pickups and see him in school plays.”

Similarly to several of the people we spoke to, Kirsch launched a new career after her BRCA diagnosis — she runs a small events company now. “I didn’t exactly find this experience empowering, like some people seem to,” says Kirsch — it was a “horrible” time. “But I’m a different person now. I wouldn’t change anything.”

The impact on children — current or future — comes up a lot in conversations around BRCA. “Especially women who have younger kids feel more pressure to make a decision to keep themselves healthy, because they feel responsibility to do what they can to be there for their kids,” says Larsen Haidle of NSGC. BRCA mutation testing has been around for about 25 years, so people are increasingly learning about their status at a younger age. Some have grown up knowing the test is waiting for them when they turn 18. It’s a lot to consider, especially for people who want kids someday — one option is in vitro fertilization with genetic screening, so that you can ensure you don’t pass on the mutation. But a more immediate concern may be, at what point do you mention BRCA to a Tinder date?

Learning about your status when you’re young does give you time to come to terms with it. Nafisa Sayani-Bromley, 32, from Kent, U.K., tested positive at age 23. “I wasn’t ready to confront it,” she says. “It was only as I approached my 30s that I thought, this is real and I need to do something about it.” Sayani-Bromley’s boyfriend proposed as she was preparing for a mastectomy: “He was ready to face it with me.” As they want to have children, she’s not doing any gynecological surgery for now.

Risk is deeply personal: What’s tolerable to one person is unbearable to someone else. Asked if people with BRCA2 are more likely to opt for surveillance over surgery compared to people with BRCA1 (where the odds are starker), Larsen Haidle says no: “The biggest decider is the experience in the family.”

Watching relatives suffer and die from cancer tends to push people toward stronger measures, whereas people who have not experienced the same level of loss are more likely to have a different view. But overall, surgery rates for BRCA previvors have risen significantly in recent years, according to researchers from Ohio State University. About half of BRCA previvors undergo prophylactic oophorectomy, and the same number undergo mastectomy, although in some socioeconomic groups it’s as low as 11% — for example Black women are less likely to be referred by their doctors for BRCA testing, and also, are less likely to have preventative surgery than white and Hispanic women.

Kelly Frantz, 41, from Pennsylvania, has known that BRCA runs in her family since her early 20s, as it had been identified because several family members had died from breast and ovarian cancer. But she didn’t get tested until four years ago. “My health insurance didn’t cover the tests back then, and my OB-GYN said there wasn’t a benefit to me knowing,” says Frantz. She was tested when a new gynecologist urged her to — the thinking around BRCA has changed a lot in just a few years.

Frantz’s decision to have surgery was cemented by the fact she has three children: She didn’t want them to have to watch her go through cancer. “When I was younger I thought, man, if all of my family members are getting cancer… I felt like, I’m going to get cancer, I’m going to die of cancer.”

Still, not everyone in her family understood why she’d go to such drastic measures. Some asked, why not just wait until she got cancer and deal with it then? “But I wanted my kids to see that I was strong enough to make a decision to prevent something from happening.” Would she have done it had she not had children? “I don’t know,” she says.

People often speak of relief after having had preventative surgery. Frantz says she feels “a lot of things.” She’s done what she can to stay healthy, but the emotional burden is heavy.

“After my mastectomy I felt like I didn’t have an identity,” she says. “I didn’t feel like a woman, I didn’t feel masculine, I didn’t know what I was. I couldn’t look in the mirror. I didn’t want my husband to look at me.” Having breast reconstruction helped. “But my relationship with my husband is a little different now. I haven’t quite gotten over it.”

Frantz finds online discussion forums helpful, as it’s a place to speak freely with others who have faced the same stark decisions. When you have not had cancer, it can be difficult to explain what all the drama is about. Also, for an issue where cancer is so close to the surface, it can feel almost frivolous to bring up things like body image and sexuality, and some doctors will skirt the issue. For this reason, Larsen Haidle often asks people about self-confidence and relationships in consultations: “Because it’s not trivial. You’re still human! Sexuality, and feeling acceptance from partners, is a big factor that’s often unspoken when women are trying to make decisions about surgery.”

To be a previvor means a life of constant vigilance. “You’re a healthy person who’s at risk,” says Larsen Haidle. “But when we do [cancer screening], a healthy person may feel sick or anxious — we might find something this time.”

While surgery significantly reduces the risk, no amount can ever fully get rid of the worry: BRCA also comes with an increased risk of fallopian, peritoneal, and pancreatic cancers, plus prostate cancer in men — recent data also hints at a connection to uterine cancer. “It’s a lifelong adjustment,” says Larsen Haidle, who recommends carriers become their own advocates.

Sayani-Bromley has always been someone who likes to plan. “My grandmother and her sisters were diagnosed with cancer in their 30s. I never had the opportunity to meet my grandmother, but as far as it’s possible, I want to make sure I can meet my grandchildren.”

Her BRCA mutation was passed down via her father. “I vividly remember telling my dad about my positive test results. There was this silence on the phone, the kind of that seems to go on forever. I think a lot about the guilt he might have felt about passing on the mutation to me,” says Sayani-Bromley. “But it’s made me stronger, and I’m less likely to be blindsided. Having this knowledge is a gift.”

Journalist and Londoner. I write about culture, urbanism, agency around health, and how technology is changing the way we live. www.jessicafurseth.com

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