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Paint Shabbat Pink

This weekend, we are hosting a special “Pink Shabbat” - a program developed by Sharsheret designed to educate women and men about the increased risk of hereditary cancer among Jewish families. I hope the following personal stories will motivate you to take this issue very seriously.  

What is a Pre-vivor?

By Julee

When my aunt passed away at 47 from metastatic breast cancer, my family considered it an odd coincidence that my grandmother had lost a sister at 47 to breast cancer, too. Then my grandmother passed from metastatic breast cancer 6 months later.

By the time I was pregnant with my first son in 2009, my OB mentioned genetic testing but at the time, only survivors in the family were tested. Survivors wasn’t something my family had.

Then in 2015 my father and brother were diagnosed with prostate cancer only weeks apart. My father’s prognosis was terminal, but my brother, at only 40 years old, was luckier. The connection of prostate cancer to breast cancer was a recent discovery.

My father tested positive for BRCA2. I was pregnant so at my next OB visit, I asked for the test. Because I had a first-degree relative who was BRCA, insurance covered it.

I was positive, too.

I met with a genetic counselor, an oncologist and a therapist, but it was peer support that I found most valuable. Women who understood the available choices, the decisions to be made, the recovery, the feelings of loss and relief. I found these women through coincidence, but Sharsheret makes sure that this support is available to all women who need it.

When the oncologist at City of Hope told me that my risk of breast and ovarian cancer would decrease by 96% if I underwent a double mastectomy and hysterectomy, the choice seemed obvious. Our family was complete which made the decision far easier.

Though the nine-hour surgery was daunting, I woke up on a Friday morning with a 80% chance of breast cancer and a 40% chance of ovarian cancer, and by day’s end, I felt like I’d effectively beaten this beast.

There’s a word for us. We are pre-viviors, a club I am proud to be a part of, scars and all.

Even though I know a need to stay diligent with appropriate screenings, I have been given decades more time with my husband and my two beautiful sons. I hope that I can pay it forward through Sharsheret so that other women can have the gift of precious time.

It’s All In The Genes

By Carrie

Cancer has been a cloud over my family for a long time. I lost my mother to breast cancer when I was 30, and years later, I lost my sister to the same disease. My aunt and another sister were also diagnosed with breast cancer and one of my brothers was diagnosed with colon cancer in his 40’s. 

When my brother discussed his symptoms with our older brother, he was shocked to find out that he had been having similar symptoms for some time, but fear kept him from checking it out with a doctor. On my younger brother’s insistence, he went to the doctor and had surgery to remove a malignant piece of colon. However, my older brother was reluctant to inform the rest of the family and only after much prodding by my younger brother did he agree to inform our sisters. 

This genetic information was of the utmost importance for our family members to be made aware of so that proper screening could be done.  I had my first colonoscopy in my mid-30’s only because of my family history – screening recommendation for the general population is at age 50.  Waiting until then could literally mean the difference between life and death.

My family and I belong to the Orthodox Jewish community.  Privacy in matters of health is the norm.  Cancer has touched the lives of so many people, and most people know of someone, whether friend or family, who has been affected by this disease. It is time for us to replace the secrecy with open dialogue between families, friends, and community so that we can help each other through this difficult ordeal with encouragement, support, information, and friendship. 

Everyone needs a shoulder to lean on and the Jewish religion is built on gemilut chasadim (reaching out to others in need).  We need to arm ourselves with an open dialogue about family cancer genetics so that we can inform and protect ourselves and our families.

I reached out to Sharsheret to try and figure out what I need to do to be proactive with my health and the health of my children. Sharsheret is extremely supportive and its staff responds so quickly. I spoke with Sharsheret’s genetic counselor who offered to set up a family conference call for me and my siblings so we can all hear the same recommendations and also have a chance to ask our individual questions. I believe this is the beginning of an open dialogue for my family that will lead us to dealing with our genetic predisposition in a more productive manner.

Prevention and support are challenging without communication.  We need to help each other with encouragement, education, and sharing our personal experiences so our friends, families, and the community we live in can benefit and hopefully beat this disease.  There is so much to be gained by connecting with others in a similar situation who can understand the rollercoaster of emotions you are feeling.

I know that privacy within the family or within the community is a deeply personal decision.  The beauty of Sharsheret is that it honors each woman’s decisions, and will tailor their support accordingly.  Sharsheret is breaking down the “Walls of Silence” through family conference calls with its genetic counselor, the national Peer Support Network which matches women with others who share their diagnoses and experiences, an online family tree tool, and providing resources, information, strength, and support.