Breast Cancer Awareness Month: Supporting Young Jewish Women with Breast Cancer
Oct 11, 2011, 4:09 PM, Posted by NewPublicHealth
Sharsheret, Hebrew for “chain,” is a national non-profit organization that provides support to Jewish young women – and their families – facing breast and ovarian cancer. The organization was founded ten years ago by Rochelle Shoretz, who received her own first breast cancer diagnosis at age 28 while clerking for Supreme Court Justice Ruth Bader Ginsburg.
Sharsheret provides help and information to women diagnosed with breast cancer or at increased genetic risk, by fostering culturally-relevant connections with networks of peers, health professionals, and resources. In the last decade Sharsheret has also become a national resource for other communities seeking to provide more culturally appropriate breast cancer education and engagement. In honor of breast cancer awareness month, NewPublicHealth recently spoke with Rochelle Shoretz.
NewPublicHealth: What is Sharsheret’s history?
Rochelle Shoretz: Sharsheret was founded 10 years ago when I was diagnosed with breast cancer for the first time, and a group of young women and I recognized that there was no national response to breast cancer in the Jewish community despite the fact that ours is a community that is hard hit by hereditary breast cancer and ovarian cancer. Ashkenazi [of European descent] Jewish women carry BRCA1 and BRCA2 gene mutations in statistically significantly greater numbers. So the organization itself started as a peer support network where women were connected one to one and has since then grown into 11 national programs that can take the Jewish family from before diagnosis when a family might suspect it is at risk of breast or ovarian cancer, through diagnosis of breast and/or ovarian cancer and then through the survivorship years.
NPH: What are some of the innovations that you’ve been able to create that specifically speak to various subgroups of the Jewish community?
Rochelle Shoretz: We created a brochure for very religious communities that have no illustrations or photographs of breasts to increase the likelihood that families would allow the tailored brochure into their homes. Another important innovation is the degree to which we respect and recognize the need for confidentiality and privacy in certain tight-knit communities. So women who want to participate but would prefer to use an alias are welcome to do so. Women who want to can be matched in our peer support network with those who live outside of their community so that confidentiality is guaranteed. We will go to the ends of the earth to maintain the privacy and the confidentiality of the women who call here.
NPH: What have you learned from working with Jewish women that might translate to other cultures?
Rochelle Shoretz: Other than the specific risk to Ashkenazi Jewish women, a lot of the issues that we address at Sharsheret are issues that other target audiences would address as well. So in the Latina community you might have a real emphasis on fertility, child-rearing and parenting issues. In the African American community you’ll also find an increased risk of breast cancer. In Asian American communities you might also find the emphasis on family and the significance of family. So there are cultural issues that we address at Sharsheret that we have found over the course of years are issues that are shared by women of all backgrounds.
NPH: How hard hit is the Jewish community both in terms of its risk for breast and ovarian cancer and the incidence of breast and ovarian cancer?
Rochelle Shoretz: The data that we have available to us is really the data that’s limited to the risk of breast cancer. We know that one in 40 Ashkenazi [of European descent] Jews, that’s both men and women, carry a mutation in the BRCA1 and BRCA2 gene. Those who carry that mutation have an about an 80% risk of developing breast cancer over their lifetime and about a 40 to 60% chance of developing ovarian cancer in their lifetime. We do not at this point have any data on the actual incidence of breast cancer in the Jewish community because it’s simply not data that has been collected. We hope in years going forward data will be collected so that we have a greater sense of the actual numbers.
NPH: How does risk compare with the general population?
Rochelle Shoretz: In the general population, one in 345 people carry that same BRCA mutation, so it’s one in 40 compared to one in 345.
NPH: What are some recent achievements at Sharsheret?
Rochelle Shoretz: This year has brought with it two tremendous successes for us in terms of federal government recognition of the importance of our work. We were just awarded a significant three year grant from the Centers for Disease Control and Prevention to develop and launch a survivorship program for Jewish breast cancer survivors; we were one of six national organizations and only one of two non-profits to be awarded that grant. So that is a tremendous statement to us about the respect that Sharsheret has garnered in the healthcare community over the past ten years. The other big success is that the CDC is studying two particular Sharsheret programs as models for best practices that will be shared with other cancer organizations. And those two successes are so remarkable to me because we are finally in a position at Sharsheret where we are able to share what we’ve learned within the Jewish community to benefit the cancer community as a whole.
People often think that the organization grew because other women found us, but the truth is it was other cancer organizations like the American Cancer Society that recognized the need for culturally sensitive breast cancer support in the Jewish community. So, we’ve come full circle. We started with the need that was identified by others in addition to ourselves and now ten years later our programs are in a platform that is strong enough to be able to be shared with other national cancer organizations.
NPH: Do you have programs underway that already benefit other populations beyond the Jewish community?
Rochelle Shoretz: We have programs called Sharsheret Supports and one of the components of it is to help educate healthcare professionals about the diversity of needs within their own breast cancer patient population. So many medical centers, hospitals, hospital staff, physicians, nurses, and nurse navigators, use this particular training because they want to address not only the needs of their Jewish patients but the needs of all of their patients regardless of the cultural-racial-religious backgrounds, and we’ve seen real success and real impact.
I think that in the ten years that I’ve been doing advocacy work we’ve seen a real shift and a growth in the voice of advocates in the cultural arena. Meaning ten years ago when I started speaking out on behalf of the Jewish community there really was sort of a big question mark in everyone’s mind – do we really need a Jewish breast cancer organization? And I think ten years later the answer is clear, yes, we do need culturally appropriate materials and programs that address the diverse needs of our target populations. And now there isn’t a concern for whether we really need this, but rather how can we replicate these programs and ensure that cancer organizations, major medical institutions and the government have access to these best practices.
NPH: What do you point to as your personal success?
Rochelle Shoretz: You know, obviously my own career path diverged significantly from the life I imagined for myself as a practicing attorney. I guess the success to me has been being able to recognize and appreciate how meaningful my work is and not mourn the loss of a career I thought I wanted when I was a younger person. I feel very blessed to be able to appreciate the work that I’m doing and to recognize how lucky I am, truly lucky to be able to do such rewarding work among so many amazing people.
This commentary originally appeared on the RWJF New Public Health blog.