Mara Berns Langer was no stranger to the words “breast cancer” when she was diagnosed at age 36. Both her mother and grandmother had died of the disease, and she was acutely aware of the signs and the genetic risk factors.
While she’d been girding herself for a breast cancer diagnosis for some time — she’d been getting regular mammograms since she was 30 — nothing could have prepared her for the reality of facing a bilateral mastectomy just months after giving birth to her first child in 2004.
Langer, who had been married two years at the time and was living in San Mateo, said her husband was wonderful but she needed another kind of support. On the Internet she found Sharsheret, a 10-year-old not-for-profit that supports young Jewish women with breast cancer and their families.
The New Jersey–based organization offers educational and advocacy materials, as well as an anonymous, peer-to-peer support network called the Link Program. Most services are free and available nationwide.
And Sharsheret is looking to expand: The Bay Area is one of a handful of metropolitan areas where the organization plans to build partnerships with synagogues, Jewish community centers and health care providers in the coming year.
“It’s been an amazing resource for me,” said Langer, who used the Link Program to connect with a Jewish woman in the Midwest who, like her, had a common form of breast cancer and had been through a similar experience. “Obviously, it’s a unique experience for anybody, but for a Jewish woman there are so many unique issues, whether it’s a questioning of faith, or losing your hair, or dealing with a tattoo, sometimes, if you have to get radiation … it’s so helpful to talk to somebody who’s been through it.”
Sharsheret, which is Hebrew for “chain,” was founded in 2001 by Rochelle Schortz, a Modern Orthodox attorney (and one-time clerk for Ruth Bader Ginsberg) who received her own breast cancer diagnosis at age 28 and found little formal support in her community. The organization recently expanded to address ovarian cancer, as well.
Genetic factors and cultural issues necessitate a Jewish response to breast and ovarian cancer, said Jennifer Rezak Miller, Sharsheret’s national director of programs and education. Miller was in San Francisco recently at a national breast cancer symposium.
“Both Jewish men and women are at a higher risk for carrying a BRCA gene mutation [that can lead to cancer],” she explained, noting that roughly 1 in 40 Jews is estimated to carry the mutation. “If you have a child, you have a 50 percent chance of passing that on.”
“We as a community need to make people aware of this in order to protect the next generation,” she added.
Sharsheret aims to serve a broad spectrum of Jewish identity — from secular Jews to the Chassidic community — and the host of challenges specific to the women’s backgrounds.
“In some parts of the Jewish community, particularly if you’re ultra-Orthodox or Chassidic, there’s a very real premium on privacy,” said Miller. “Especially for young women, if you’re diagnosed in your early 20s, in some communities that can mean ‘Am I marriageable?’ ‘How does it affect my family for this to be public knowledge?’ ”
Sharsheret offers all of its services with the option of anonymity; the organization maintains a roster of women who have asked to receive their materials in unmarked envelopes.
The Link Program, designed to connect women from similar backgrounds and levels of observance, also can be anonymous but often leads to deeper connections. “We know of women who have formed really close friendships after being paired through this program,” said Miller.
Sharsheret offers genetic counseling to people wondering about their risk factors. Complicating the issue for some Jews is that a chunk of family history has been lost to the Holocaust. Assessing the genetic probability of getting cancer is more difficult when the family tree doesn’t extend beyond one generation.
As for Langer, whose cancer came back two years after her mastectomy — when she was 38 and pregnant with her second child — her experiences with Sharsheret are part of what inspired her to become an advocate for breast cancer awareness.
Now 43 and raising two healthy children, Langer soon will celebrate the five-year anniversary of being free from cancer for a second time. She is a regular speaker at Avon-sponsored and other breast cancer fundraisers, including Chabad’s annual “Pink Shabbat” at U.C. Berkeley.
“I just can’t imagine if I had had to go through this experience alone — at all, let alone twice,” she said. “And my being able to help another woman, or a caregiver or family … if I can help that surgery be just a little softer, help the process feel a little less overwhelming, then my experience isn’t useless.”
For more information, visit www.sharsheret.org.