For women using IVF to screen embryos for genetic diseases, these peers can offer support

In March 2020, around the time B. and her husband started planning to have children, they learned they each carried genetic mutations with significantly elevated risks for a variety of cancers.

BRCA genetic mutations, which are 10 times more common among Ashkenazi Jews than among the general U.S. population, significantly increase the risks of developing breast cancer and ovarian cancer – and also melanoma and prostate and pancreatic cancers. If either parent carries the BRCA mutation, each child has a 50% chance of inheriting it. If both parents carry it, as in B.’s case, the likelihood is even higher. 

The couple had to make a decision: They either could try to conceive naturally and bear the risks, or use in-vitro fertilization (IVF) and test the embryos for the BRCA mutation before implanting. This type of procedure is called preimplantation genetic testing, or PGT. 

Sometimes, PGT is unsuccessful and people are left without viable, mutation-free embryos to implant.

B., who underwent a prophylactic bilateral mastectomy to reduce her own risks after her mother was diagnosed with breast cancer, opted for IVF with PGT. It all made for a very emotionally and physically challenging experience. 

Fortunately, B. said, she was able to lean on Sharsheret, the international Jewish breast cancer and ovarian cancer organization, for help connecting with other Jewish women who had undergone the same procedures. Now a mother of two, B. is paying it forward  by volunteering in Sharsheret’s peer support network — and providing unique counsel based on her experiences.  

“We are all going through the same thing and we all have these same thoughts, like: How am I going to fit this all in? How am I going to be able to do the IVF while going through these surgeries?” said B., who asked for anonymity to preserve her privacy. 

Sherry Helfand Wiener, a former Jewish day school teacher and grandmother with the BRCA gene mutation in her family, recently donated money to Sharsheret to help expand its program that connects women to peers who have gone through the experience of preimplantation genetic testing.

“I have had experience with PGT — a very beautiful experience —and I have two extraordinary grandchildren because of it, and we are not going to be passing the BRCA gene mutation anymore,” said Helfand Wiener, who lives in Westchester County, New York. “There is so much in life we don’t have control over, but we can control this.”

Peggy Cottrell, Sharsheret’s genetic counselor, said the peer network is critical because, due to the private nature of the issue, it’s very hard for women to find others whom they can ask questions. Sharsheret often receives calls from women seeking clarification about IVF and preimplantation genetic testing.

“Sometimes people think when they get an appointment with a reproductive endocrinologist their eggs will be retrieved that day,” said Sharsheret’s chief operating officer, Devorah Silverman. “But there is a long and intensive process women must undergo before any eggs can be harvested for IVF and PGT.”

When women learn that they can use PGT to avoid passing on the BRCA mutation to their children, it’s often a great relief to them, according to Cottrell. But there also can be ambivalence about the idea of weeding out embryos with the gene — because if their parents had done so they wouldn’t have been born themselves.

The financial burden is another big thing to consider. The average cost in the US of successfully conceiving a baby and carrying it to term using IVF and PGT ranges from $30,000 to $47,000, according to a 2021 study in the Journal of Fertility and Sterility. Most insurance does not fully cover these procedures.

Sharsheret does not provide financial subsidies but connects callers with organizations that may offer help. 

Another woman who carries the BRCA mutation, A., said she decided to do PGT despite the cost and the fact that it’s “physically, emotionally and mentally wearing on your body.” Both she and her mother carried the BRCA mutation, and her mother died of ovarian cancer in 2014.

“I certainly didn’t want my children to experience what my mother faced,” A. said. “We lost her way too young.”

After five IVF cycles and PGT testing, A. successfully conceived a girl and a boy, neither of whom carries the BRCA mutation. 

“I have two beautiful, amazing, rambunctious children, and I have the family that I always wanted, and I am so grateful for that,” she said.

But the process was grueling, and A. hadn’t known about the peer support Sharsheret offers. Now she serves as a peer counselor and has spoken about her experience with about 15 women over the last couple of years. 

Women ask her everything from what the daily IVF routine is like to how it might impact their relationship with their partner. A. says it’s important to establish a support system and lean on friends and peers.

B. said she also found parts of the process very difficult — such as having to give herself injections to prepare for having her eggs removed, which she found scary. It was also hard waiting for nurses to call back with results, she said.

Despite the hardship, B. says she’d love to have another child. She’s also considering having her fallopian tubes and ovaries removed once she is done having children to protect against an ovarian cancer diagnosis.

As a volunteer in Sharsheret’s peer support network, B. has spoken with eight women about her experience. The importance of peer support is invaluable, she said.

“Finding a community of women that are going through that — I feel like that’s very special,” she said.

Sharsheret offers oncofertility and PGT education, clinical support and peer support. These resources are made possible by the generosity of Sherry Helfand Wiener. For more information and to speak to a licensed social worker or genetic counselor, contact clinicalstaff@sharsheret.org.