"So, Doctor, you're telling me that I have an 80 percent chance of getting breast cancer and a 50 percent chance of ovarian cancer?" I asked.
This felt eerily reminiscent of my early childhood years. I frequently remember hearing my mother ask our relatives, "Can you believe she has to do another round of chemo?" That is how almost every holiday dinner started. Everyone discussed who was the latest person battling cancer and where was she in the treatment process.
For however long I can remember, there was always that ominous threat of the "C" word. I don't believe there was ever a family get-together without the mention of cancer.
My family carries the mutated BRCA1 gene. We ALL have this gene, but my particular family has a mutation on this tumor suppressor gene. There was always a 50/50 chance that I would have BRCA, explained to me by Ora Karp Gordon, MD, Director of the GenRisk Adult Genetics Program at Cedars Sinai Hospital and author of "Positive Results - Making the Best Decisions When You're at High Risk for Breast and Ovarian Cancer." After my mother got breast cancer, I started asking questions. The answers I discovered were daunting and terrifying. My grandmother died at 46, her sisters at 24, 38, and 57 from either ovarian or breast cancer. Only one sister is still alive after many, many bouts with cancer. My grandmother's generation had been riddled with breast and ovarian cancer and it was becoming evident in the next generation. My own mother got breast cancer in her forties; her two cousins had breast cancer (one died at 50) and her sister died at 63 of primary peritoneal carcinoma, a form of ovarian cancer. It wasn't until my great aunt was tested that we knew cancer didn't "just run in our family" but many of us carried the BRCA1 gene. Already in my generation two cousins have had breast cancer.
I tested positive for the BRCA1 gene. This meant that my breast cancer risk was as much as 80 percent but the general population's was 12 percent and there was an over 50 percent risk of ovarian cancer versus a 1.4 percent risk for those without BRCA, according to Gordon. There was not a thing I could do to change that. I was an exercising, non-smoking, vegetarian. I had always been healthy. I was told that it did not matter. The usual precautions that everyone else could take did not affect this gene; I was powerless over my destiny. Apparently this was known as the "Ashkenazi Jew" gene. Incidences of this familial breast and ovarian cancer were found in 2.5 percent of the Ashkenazi Jewish population and that makes up 10 percent of all hereditary cancer, explains Dr. John Jain, head of the Santa Monica Fertility Center. He further clarifies, "Ashkenazi Jews are just the best record keepers ... this gene is actually present in the general population but the Jewish community just kept the best track of it."
Many in my family put their heads in the sand, going to the doctor the way a normal person would for early detection. Others just avoided the topic completely and didn't get tested. I, however, was obsessed with being free and not being a slave to the potential ticking time bomb that could be inside of me.
There were many "choices" that I made after discovering my positive sentence. I braved the uncertain waters stoically and refused to think or feel what I was going through while I was preserving my life. Almost catatonically I went through procedure after procedure to ensure the safety of my body, my life, and my future. Although this is a huge feat, it was still for ME. I was lucky enough to have insurance that allowed me to proceed, a support system that stood by me, and enough of a sense of self to withstand it. But wasn't there something that I could do to help and make sure nobody else would have to go through what I did?
My path of seeking to preserve my own life led me to Dr. Jain at the Santa Monica Fertility Center who is interested in protecting everyone's lives. He is at the forefront of eradicating familial cancer -- and I was to be the first guinea pig.