In March 2020, as B. and her husband began their journey toward parenthood, they discovered that both carried genetic mutations significantly increasing their risk for various cancers. These BRCA mutations, particularly prevalent among Ashkenazi Jews, heighten the likelihood of developing breast and ovarian cancers, as well as melanoma, prostate, and pancreatic cancers. The couple faced a critical decision: conceive naturally with potential health risks or pursue in-vitro fertilization (IVF) with preimplantation genetic testing (PGT) to screen embryos for the mutation.
Choosing the latter path, B. underwent a prophylactic bilateral mastectomy to mitigate her cancer risks following her mother’s breast cancer diagnosis. This decision led to an emotionally and physically taxing experience. Fortunately, she found support through Sharsheret, an international organization focused on breast and ovarian cancer within the Jewish community. This connection allowed her to engage with others who had faced similar challenges. Now a mother of two, B. volunteers with Sharsheret’s peer support network, offering guidance drawn from her personal experiences.
“We are all going through the same thing, and we share thoughts like: How am I going to manage IVF alongside these surgeries?” said B., who prefers to remain anonymous for privacy reasons.
Sherry Helfand Wiener, a grandmother with a family history of the BRCA mutation, has also contributed to Sharsheret, funding its program to connect women who have undergone PGT. “My experience with PGT was beautiful, and I now have two extraordinary grandchildren,” she shared. “There’s much in life we cannot control, but this is one area we can.”
According to Peggy Cottrell, Sharsheret’s genetic counselor, the peer support network is crucial, as the private nature of genetic testing makes it difficult for women to find others to discuss their experiences with. Sharsheret often fields inquiries from women seeking information about IVF and PGT processes.
“Some think that an appointment with a reproductive endocrinologist means their eggs will be retrieved immediately,” explained Devorah Silverman, Sharsheret’s chief operating officer. “In reality, there is an extensive process women must navigate before any eggs can be harvested.”
The ability to use PGT to avoid passing on the BRCA mutation often brings relief, Cottrell noted. However, there can also be ambivalence about selectively discarding embryos, as it raises ethical questions about existence and parental choice.
Financial considerations are another significant factor; a 2021 study published in the Journal of Fertility and Sterility estimated the cost of conceiving and carrying a baby to term via IVF and PGT in the U.S. to range from $30,000 to $47,000, with most insurance plans failing to cover these expenses. While Sharsheret does not offer financial assistance, it connects individuals with organizations that may help.
Another woman, A., chose to undergo PGT despite the emotional and physical toll and the financial burden. She and her mother both carried the BRCA mutation, and her mother succumbed to ovarian cancer in 2014. “I certainly didn’t want my children to experience what my mother faced. We lost her way too young,” A. reflected.
After five cycles of IVF and PGT testing, A. successfully gave birth to a daughter and a son, both free of the BRCA mutation. “I have two beautiful, amazing, rambunctious children, and I am so grateful for that,” she expressed.
The journey was challenging, and A. was unaware of Sharsheret’s peer support until later. Now, she serves as a peer counselor, having spoken with about 15 women over the past two years. These conversations cover everything from daily IVF routines to the potential impact on personal relationships. A. emphasizes the importance of building a support network.
B. also found aspects of the process daunting, such as self-administering injections for egg retrieval, which she found intimidating. The anxiety of waiting for test results added to her stress.
Despite the difficulties, B. expresses a desire to have another child and is contemplating the removal of her fallopian tubes and ovaries after completing her family to reduce her risk of ovarian cancer.
Through her volunteer work with Sharsheret, B. has shared her story with eight women. She believes that finding a community of women undergoing similar experiences is invaluable. “That connection is very special,” she noted, emphasizing the power of peer support in navigating their shared challenges.
Related topics:
