It’s not just the same shoe size that Jaime Wright inherited from her mother, or her love of music, entertaining or singing in the car.
So Wright, a mother of two, has the increased challenge of parenting with the BRCA gene mutation. Women with the mutations are encouraged to get preventive double mastectomies and hysterectomies — surgeries with grueling recoveries that render the women unable to breast-feed or get pregnant — to reduce their risk of contracting cancer. Wright wishes she could discuss this with her mother, Lolly Toll. But Toll passed away in 2012 after a 15-month battle with ovarian cancer.
Other mothers face similar challenges when learning they have the BRCA mutation, and in trying to devise a way forward. Here are some of their stories, and how they’re using their experience to help others.
A race to get pregnant
Steff Lyon-Stirling, 33, and her husband put their plans on hold for a second child when she found out she tested positive for the BRCA 1 mutation.
“If I don’t get pregnant in six months, then it’s not going to happen,” she says.
Her mother passed away from ovarian cancer in 1998, when Lyon-Stirling was 14. Because she’s considered high-risk for ovarian and breast cancers, doctors are encouraging Lyon-Stirling to have a hysterectomy or oophorectomy (ovary removal) as soon as possible, before she turns 35. She did a round of preliminary testing to assess her cancer risk before being given a green light, with a timetable, to try to get pregnant for the second time.
Passing the mutation on
Tucked into Samantha Sunderwith’s adoption notes from 1983 was a line that six women from her biological mother’s family had breast cancer. It wasn’t until she learned of Angelina Jolie’s preventive double mastectomy that Sunderwith learned she had the BRCA 1 mutation. Children have a 50 percent chance of inheriting the mutation from a parent who has it, and Sunderwith felt guilty that her daughters, ages 6 and 4, might have it.
“Everyone says there is nothing you could have done, but I still feel guilty,” she said.
Wright, too, acknowledges that guilt. A year after testing positive for BRCA 2, she had her daughter, Adina.
“I am sure there are people who would judge me for that,” she says. “We looked into whether it was worth doing an IVF situation. The doctors really didn’t want me to do that. I don’t know if that answer would be different today.”
Doctors may be hesitant to give high-risk, BRCA women any kind of hormones because they are thought to drive cancer, though the claim has not been validated specifically in the BRCA population. One study concluded that women who took hormone replacement therapy had an increased risk of breast cancer, but it was post-menopausal women, which critics say cannot be equated to young women of childbearing age.
The risk was one Lindsay Avner was willing to take. Avner was 22 when she tested positive for the BRCA 1 mutation, and she had a double mastectomy at age 23. When she and her husband were ready to have a child, she opted for IVF with preimplantation genetic diagnosis, which screens embryos for genetic mutations before implanting. Her daughter Lucy was born, sans BRCA mutation, in 2016.
Avner, the founder of Bright Pink, a nonprofit focused on the prevention and early detection of breast and ovarian cancer, said any risk was worth the peace of mind for her daughter. She wants a second child, and plans to have her ovaries removed when she is 37. “Getting pregnant is a risk too, hormones go wild in pregnancy,” Avner said. “I think this route is going to be more common.”
Breast-feeding and the double mastectomy
When her second child, Max, was born in 2014, Lauren Mezrahi had a rule at the hospital. “No one was allowed to ask me about breast-feeding,” she said.
Mezrahi and Wright are sisters who share the BRCA 2 mutation. Mezrahi underwent a double mastectomy and reconstructive surgery, rendering her unable to breast-feed.
“People come in, they ask, how are you feeding the baby?” Mezrahi says, referring to nurses and lactation consultants at the hospital, who often offer to assist with feedings. “I didn’t want people to ask me about that.”
Lisa Schlager, vice president of community affairs and public policy for FORCE, a nonprofit organization devoted to hereditary cancers, estimates that half of the women who test positive for BRCA mutations go through one or more preventive surgeries, which can reduce the risk of cancer by 95 percent. The other options are extensive monitoring or proactive chemotherapy.
Mezrahi and her husband were considering a third child, but the fear of ovarian cancer become overwhelming.
“Any normal ovulation pain would send me into crazy anxiety mode and I would start diagnosing myself,” she said. Ovarian cancer is harder to detect, and symptoms (such as stomach pain, bloating, or gas) are so common that many women and physicians are unable to recognize the signs until the cancer has advanced and spread to the abdomen or lymph nodes.
“Sometimes I wonder, ‘What the hell did I just do?’ But I used to talk to my mom a million times a day, so when she died, I thought, ‘Who am I going to talk to this much? Ultimately that’s the main reason I had the surgery,” said Mezrahi, who remembers watching her mother die. “My kids can never experience that. It’s not even an option. What other organ can you take out of my body? Sign me up.”
Wright is also wistful at the lost opportunity for a third child. “The most prudent course of action medically speaking would be to move forward with a hysterectomy,” she wrote in an email. “I have two amazing children and I am so lucky, so I try not to dwell on what I don’t have, but I would be lying if I said that I didn’t envy those who still had the option to have a third child.”
The way forward
“My kids don’t even know what cancer is at this point,” said Sunderwith, who has her hysterectomy scheduled for November. “I say, ‘There is a little something in mommy’s body that makes her sick, and the doctors are going to remove that part.’ ” Her daughters worried most about how long she would be in the hospital. “Two days,” said Sunderwith. “They still ask, is the little thing still in your body that is going to make you sick? I tell them the doctor removes the part that could get sick, so you don’t worry about that anymore.”
“I stick to promises I can keep,” says Wright. “I can’t say I’m never going to die, but I can say I’ll be with you as long as I possibly can. I hope I get to be very old and I get to see you do everything you do, but I can’t say I am not going anywhere. None of us can say that.”
Schlager, herself a BRCA 1 carrier, describes talking to other women who have the mutation, and taking them aside to lift her shirt, show her scars and reconstructed chest and let them know that such drastic surgeries can still turn out okay.
Wright turned her mother’s battle with cancer into her life’s work. She, along with Mezrahi, their stepfather Steven Toll, and their stepsiblings founded Lolly’s Locks, an organization that provides free, high quality wigs to cancer patients.
Sunderwith is planning to go back to school in January to study nursing and wants to go into oncology. “I feel like I’ve cheated cancer. I’ve eliminated most of the possibility of it getting me,” she said. “I feel like I want to fight it for those that aren’t so lucky.”
Rebecca Gale is a journalist based in Bethesda, Md. Follow her on Twitter @beckgale.