Young, Jewish and Metastatic

If you are a young Jewish woman with breast cancer, how can you have genetic counseling when your family history was destroyed in the Holocaust? Or what if your parents survived the Holocaust and you don’t want to add to their burden by telling them you have breast cancer? Or what about the challenge presented by hair loss when parts of your culture say that only married women wear wigs?

Rochelle Shoretz, founder and executive director of Sharsheret, a non-profit for young Jewish women with breast cancer, says it is these and other issues specific to Jewish women that the organization address through peer support, web programs and blogs.

"Some parts of our culture consider discussion of cancer taboo because it may, in certain communities, influence a woman’s ability to marry," says Shoretz. “And what about fertility in a culture that focuses on family?”

In 2001, Shoretz had just finished clerking for Supreme Court Justice Ruth Bader Ginsburg and was taking time to raise her two sons, ages 3 and 5, when she was diagnosed with stage 2 breast cancer. She was 28.

“I had never heard of a woman in her 20s with breast cancer, but I knew many Jewish women who had the disease. We have communal organizations for everything, but there was no organized response to breast cancer.” So when friends asked what they could do to help, Shoretz says it wasn’t about meals or child care, it was about finding other young Jewish women with breast cancer who could counsel her on resuming her law career, raising her children and other aspects of living with breast cancer as a young Jewish woman.

Soon Shoretz was talking with numerous young Jewish women. “I anticipated it would be a network, but then we got requests from the American Cancer Society to provide sensitivity training to their volunteers.” Shoretz founded Sharsheret (Hebrew for “chain”), which has now become a national organization.

As the organization has grown, Shoretz says they have reached more than 20,000 families and have more than 1,000 women from 45 states involved in their peer-support network. Shoretz says the desire for a broad reach and to accommodate the busy lives of young women influenced their decision to provide their programs on the Web and by phone.

Specialized programs provided by Sharsheret include one for ovarian cancer survivors and a genetics program. The group also has a program for metastatic survivors called Embrace, which has become increasingly important to Shoretz since she learned in 2008 that her cancer had recurred in her bones. With her disease stable, Shoretz continues to grow the organization, which now has six full-time and four part-time employees.

Of particular interest for Sharsheret is breast cancer genetics since an estimated 1 in 40 Ashkenazi Jewish men and women carry the BRCA gene mutation compared with around 1 in 200 in the general population, Shoretz says.

“One of our core initiatives is to educate families to start recording their cancer history now,” says Shoretz, who is negative for a BRCA mutation. “My discussion with the genetic counselor was about two minutes long because I lost my family history in the Holocaust. We can’t go back, but we can go forward for the next generation, and we need to know how to do that responsibly.” Shoretz says the organization welcomes anyone who wants information on genetic issues whether or not they are Jewish. Go to www.sharsheret.org for upcoming programs.