Jaime Wright inherited from her mother a love of music and her shoe size.
She also inherited an elevated risk of getting cancer.
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.
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.
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.
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.”
When her second child, Max, was born in 2014, Lauren Mezrahi had a rule at the hospital.
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.
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 is 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.”
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.