February was an intense time on The Layers Project Magazine.
When I began this issue, I knew that BRCA genetic mutations affected Ashkenazi Jewish women significantly more than the general population. I knew that there were many corners of our Jewish communities where women were not getting accurate or medically responsible information about their risks. Community leaders encouraging avoidance of testing out of fear that somehow the knowledge that a family contained carriers for the mutation would adversely affect the marriageability prospects of the whole family.
I knew that this tremendous communal problem was not being spoken of from the pulpit, at times because the words “breast” or “ovarian” are deemed by some as immodest, even when they are connected to the word, “cancer.” I knew that through our magazine focus, I would meet many women who have lost mothers, sisters and friends. I would hear from women who were wrestling with the implications of raised statistics and probabilities of cancer disrupting their lives.
I was not aware of how much I needed to learn about my personal risk and our Jewish communal risk across the board.
After discovering that I would need to learn more before I and my editorial team would be prepared to conduct a responsible and productive conversation about BRCA genetic mutations, I reached out to Sharsheret for help and guidance. Sharsheret is a national not-for-profit organization supporting Jewish women and their families facing breast cancer. Their mission is to offer a community of support to women, of all Jewish backgrounds, diagnosed with breast cancer or at increased genetic risk, by fostering culturally-relevant individualized connections with networks of peers, health professionals, and related resources. Adina Fleishmann, LSW, the Director of Support Programs, and Peggy Cottrell, MS, CGC, the Genetics Program Coordinator, gave us at LPM a training and an enlightening conversation about the myriad of challenges- emotional, practical, and medical- that women face when they discover they are BRCA positive.
I also went to visit Sharsheret’s headquarters in Teaneck, NJ and I was overwhelmed by the breadth of services that Sharsheret provides and I felt so grateful that such an organization even exists. I was also frustrated that I had never been taught more, by any Jewish institution about this very prevalent issue in our communities. I wondered if I was the only one who was missing this vital education, and I posted a poll on LPM’s Facebook page asking our followers to indicate whether or not they had ever received education about BRCA mutations from a Jewish institution. Out of the 365 votes submitted, only 23% responded that they had received information from a Jewish institution. 77% had not.
Why are we not sharing our options and educational resources in the places where many of our lives revolve?
At LPM we spent one month talking about BRCA mutations, but Sharsheret spends all year trying to engage Jewish communities in conversation about BRCA-related cancers and educating us about our risks. I wanted to get into the field and get a sense of how they spread awareness with all generations of Jewish women. Melissa Rosen, Sharsheret’s Director of National Outreach, invited me to come to a “Pink Challah Bake” that she was running in East Brunswick, NJ so that I could see for myself their effort to educate about cancer awareness, prevention, and support. She told me that it was an intergenerational event; that mothers, grandmothers, daughters and sisters would be there together.
When I entered the event, there was a long table filled with movement. Hands of every age were braiding intertwined ropes of bright pink dough. The finished ones were glossy with egg wash, others sparkling with pink sugar on top. Mothers and daughters braiding together, with friends present as a show of support. Everyone was touched by cancer in some way.
I spoke with a mother and daughter, Sharon and Lyndsey Lipson, about why they came to the “Pink Challah Bake.” Sharon shared, “Over the course of one year, four different women who were very close to us (not related) were diagnosed with breast cancer. They were people so connected to us- we were walking them through and being a part of the process every day. The mothers of my daughter’s two best friends were both diagnosed with breast cancer. Lyndsey was 13 years old when we were all introduced to this cancer.”
I asked Lyndsey what the experience was like for her. “It was very hard for me to see my friends go through that. It was so hard for me to know what to say because I had never experienced anything like this before. There was nothing magical that I could say to make the pain of this for my friends go away. I just had to sit with the fact that all I could do was be there for them.” Sharon added, “For some women with cancer, sometimes their friendships are not kept up because people don’t know what to say. We learned to just be with them. Be happy when they are happy. Be there for them when they needed to cry. Just be with them.”
She then added, “I came out to this event for women and Jewish women, so that we can enhance our knowledge on the issue. I brought my daughter so we both can learn about maintaining our own health, caring for our bodies, being aware- I have three daughters. These are moments and conversations that are difficult to have. An opportunity like this- coming together to bake some challah- is a lovely way to have this conversation.”
While the challah was set to rise, Melissa rose to begin the “talk” part of the evening. As she spoke, I surveyed the women in the audience. Many nodded along with the statistics and options that Melissa shared. There were plenty of brows furrowed in confusion or concern. There were many questions asked by the audience that night.
Though I had known Melissa for many years, I did not realize that she too, was a breast cancer survivor. The incredible support she received from Sharsheret during her illness inspired her to join their team when a fitting position opened up. She spoke about why breast and ovarian cancers were “a Jewish issue,” how to determine personal risk, and how to lower their risk. She educated us about signs and symptoms of cancer and how we as individuals can raise awareness ourselves.
Melissa explained that Sharsheret is the only organization in the US that is dedicated to providing culturally meaningful support for Jewish women facing breast and ovarian cancer. “It’s important because study after study has shown that patients that have their non-medical needs met have better medical outcomes. That means that our community can survive in greater numbers and for longer, getting through treatment with fewer complications.”
She continued, “One of our most common questions is, why do we even need a Jewish organization? Aside from providing culturally and religiously meaningful support, we also have the BRCA genetic mutation issue. In the general population, 1 in 500 men and women will be a carrier for a BRCA mutation. In the Jewish Ashkenazi community, the number is 1 in 40. More than 10 times the rate.”
As staggering as that number seemed to me, her next statement hit hardest. “We talk so much about BRCA, because it is so prevalent in our community. I do want to point out, that only 10-15% of Breast and Ovarian Cancers are hereditary in nature. Overall, 1 in 8 women will be diagnosed in their lifetime, whether they carry a mutation or not. If you find you don’t carry a mutation, that is a wonderful thing, but it doesn’t let you off the hook for caring for yourself.”
A powerful statement about self-care.
Regardless what genetic testing results say, we can take preventative steps by self-checks, doctors visits and following through with whatever surveillance is recommended for us. This message is an important lesson to leave us with as we move into a new month on The Layers Project Magazine, where we will be talking about caregiving and self-care.
To learn more about Sharsheret, please visit their website at www.sharsheret.org.