In March 2020, as B. and her husband began planning to have children, they learned that they each carried genetic mutations that put them at significantly increased risk for several types of cancer.

BRCA genetic mutationsThis disease, which is 10 times more common among Ashkenazi Jews than in the general U.S. population, significantly increases the risk of developing breast cancer and ovarian cancer, as well as melanoma, prostate and pancreatic cancer. If either parent carries the BRCA mutation, each child has a 50% chance of inheriting the mutation. The probability is even higher if both parents carry it, as in B.’s case.

The couple had to make a decision: either try to get pregnant naturally and accept the risks, or use in vitro fertilization (IVF) to test the embryos for the BRCA mutation before implanting them. This type of procedure is called Pre-implantation genetic testing or PGT.

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

B., who underwent a prophylactic bilateral mastectomy in order to reduce her own risks after her mother was diagnosed with breast cancer, preferred in vitro fertilization with PGT. This all led to an emotionally and physically challenging experience.

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

“We all go through the same things and we all have the same thoughts: How am I going to fit it all in? “How will I do in vitro fertilization while doing these surgeries?” said B., who asked to remain anonymous to protect his privacy.

Sherry Helfand Wiener, a former Jewish day school teacher and grandmother whose family has a BRCA gene mutation, recently donated money to Sharsheret to help expand the program that connects women with peers who have experienced pre-implantation genetic testing.

“I had the experience with PGT — a beautiful experience — and because of it, I have two extraordinary grandchildren and we will no longer pass on the BRCA gene mutation,” said Helfand Wiener, who lives in Westchester County, New York. . “There are many things in life we ​​cannot control, 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 is very difficult for women to find others they can ask questions. Sharsheret often receives calls from women seeking clarification about in vitro fertilization and pre-implantation genetic testing.

“Sometimes when people make an appointment with a reproductive endocrinologist, they think their eggs will be retrieved that day,” said Devorah Silverman, Sharsheret’s chief operating officer. “But there is a long and intense process that women must go through before eggs are collected for IVF and PGT.”

According to Cottrell, when women learn that they can use PGT to avoid passing the BRCA mutation to their children, it is often a huge relief to them. However, there may be uncertainty about the idea of ​​gene selection of embryos; because if their parents had done that, they wouldn’t have been born.

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

Sharsheret does not provide financial aid but connects seekers with organizations that can offer assistance.

A., another woman who carries the BRCA mutation, said she decided to undergo PGT despite the cost and the fact that it “wears out your body physically, emotionally and mentally.” Both she and her mother carried the BRCA mutation, and her mother died of ovarian cancer in 2014.

A. said, “I definitely did not want my children to experience what my mother experienced.” “We lost him at such a young age.”

After five IVF cycles and PGT testing, A. successfully became pregnant with a girl and a boy, neither of whom carried the BRCA mutation.

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

However, the process was arduous and A. was not aware of the peer support Sharsheret offered. She currently serves as a peer counselor and has spoken about her experiences with approximately 15 women over the past few years.

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

B. also said that he found some parts of the process very difficult; She found this frightening, as did having to give herself injections to prepare for the removal of her eggs. She also said it was difficult waiting for the nurses to call back with the results.

B. says that despite all the difficulties, she wants to have another child. She is also considering having her fallopian tubes and ovaries removed after having children to guard against a diagnosis of ovarian cancer.

B., a volunteer at Sharsheret’s peer support network, spoke to eight women about her experience. The importance of peer support is invaluable, he said.

“To find a community of women who are going through this, I think that’s very special,” she said.

Sharsheret offers oncofertility and PGT trainingclinical support and peer support. These resources are made possible by the generosity of Sherry Helfand Wiener. For more information and to speak with a licensed social worker or genetic counselor, contact [email protected].