As an outreach coordinator for the organization FORCE (Facing Our Risk of Cancer Empowered), Shainman provides resources for women who grapple with the tough decisions they are facing after finding out they are BRCA gene carriers.
Having traveled this path, she is very honest in telling women how the surgery will alter their bodies and change their life. She believes education is key among doctors and patients to prevent, treat and conquer cancer in BRCA gene carriers.
"Hereditary cancer needs to not only be on the radar of all women, men and families -- but on doctors' radar, no matter their specialty," she says. "The medical community as a whole needs the training/education on hereditary cancer so they can look for hereditary cancer signs in their patients, ask their patients the right questions and then advise those patients that fit the criteria to get genetic counseling.
"People make hugely important health decisions based on this one test, so the pre-genetic test counseling and the post-genetic test counseling are essential."
Shainman has a history of cancer in her family and knew she needed to be tested for the gene. Once the results came back positive, she did a lot of research and used the FORCE organization to help her make the decision.
She chose to have both a hysterectomy and mastectomy to avoid cancer. She believes having surgeries are the only "cure" for BRCA patients.
She says she could not live with the continual anxiety of not knowing what would show on her next mammogram or breast scan. She says having the surgery allows her to feel relieved.
"Every day when I see my children at the breakfast table and am able to make them breakfast and get them off to school ... I am thankful and I know I made the right choice."
A few months after Cara Scharf graduated from college, her dad encouraged her to get tested for the BRCA mutation. Her mother died of breast cancer when she was 3, and her grandmother died of ovarian cancer before she was born.
When she tested positive for the gene, surgery seemed like a drastic move. She was 22. She decided it was best to undergo regular screenings and MRI scans to detect any abnormalities early.
"I think some people don't realize how serious of a surgery it is," Scharf says. "It is an amputation. Your body will never look the same and there is a high risk of complications. I wanted to keep my body the way it was and I was convinced that I had time to make my decision."
Three years later, her scans showed breast cancer.
The doctors were able to catch the disease in the early stages because she had been so vigilant about her screenings. But having breast cancer and undergoing chemotherapy at 25 was rough. Her brother got married that year, and she had to wear a wig to the wedding.
She, too, decided to have a double mastectomy to prevent the cancer from returning. She still lives in fear of a relapse.
"Young breast cancer survivors have a whole set of issues to deal with that are different from breast cancer survivors who are older," she says. "I'm not saying the following considerations are exclusive to young breast cancer survivors, but they are experienced differently: Fertility, relationships, long-term survivorship, body image, dealing with friends who don't understand."
She says she now finds herself asking a lot of existential questions like, "Why am I here?" and "What's my purpose?"
She doesn't blame herself for not having surgery when she was younger. She has joined a couple of young breast cancer survivor groups and says they have helped her through the process. Her focus now is how she can live out her dreams.
Lisa Fassnacht watched her sister, Christy, die from breast cancer when her sister was 34 years old. While Christy was fighting for her life, she begged her sister to get tested for the gene mutation and have the necessary surgeries so Lisa's children wouldn't have to watch their aunt battle a debilitating disease.