She knows some will say that her prophylactic double mastectomy was a radical choice and that she might never have developed breast cancer. But she wasn't willing to live with the threat hanging over her head.
Sophie has told very few friends and relatives about what she's done, partly because her privacy is important to her and partly because she knows reactions may vary. In a culture where many women choose lumpectomy instead of mastectomy to keep their breasts intact, she understands how painful and difficult a decision like this can be.
In her own words, Sophie explains why she chose a double mastectomy and how it's changed her life.
Outliving Family History
My sister and I both grew up under the “breast cancer” cloud. Our mother was diagnosed at age 34 and died at 41. The knowledge that breast cancer could be hereditary was with me 24/7.
I know other women growing up with a family history of breast cancer feel the same way. You know what your legacy is, but because you're in your twenties you still feel immune. However, every form you fill out, every interview you have in the examining room, your family history looms large. Nobody wants to take any chances with you.
It wasn't until my 30th birthday - when I had my baseline mammogram and my chart had the stamp of “family history”- that the fear began. The grief of my mother's loss, and the knowledge that it was due to breast cancer had always been present in my life. But once I turned 30 and became a mother, the fear kicked in. I had so much more to lose now. I didn't want to leave my children motherless as I had been.
Each year I had annual mammograms and extra exams by a surgeon. Extra precautions were taken including many biopsies that turned up nothing but frayed nerves. The mammograms were especially unnerving. "Seek and you shall find," I thought...and worried. Each year as I sat in my gown waiting to be told I could get dressed and no more “views” were needed, I thought, "This could be it—the year it happens to me."
Choosing Genetic Testing
When I was 36 I decided to take the test for the breast cancer gene: BRCA 1 & 2. It was a simple blood test. I paid around $1,000 out of pocket. I made a deal with myself. If the genetic test came back negative I would let myself off the hook. I would continue to be vigilant about early detection but I wouldn’t identify so much with every woman’s sad breast cancer story. I would try to remind myself that I wasn’t doomed and breast cancer wasn’t coming to get me as it had my mother. We didn’t know if my mother carried the gene but if I tested negative I would assume (or pretend) that I was in the general female population and maybe a diagnosis of breast cancer was not my fate.
The test came back negative. I cried with relief. I knew from my research that hereditary breast cancers were actually the minority of cases but l I was still relieved in a big way that I didn’t carry the breast cancer gene.
The black cloud dissipated for a few years. But then it came back with a vengeance.
Making a Deal With Myself
My sister was diagnosed with pre-menopausal breast cancer at age 48. It was a nightmare but on some level we knew it was coming.
That’s just how it feels when you live under the cloud.
My sister had a double mastectomy, chemo, radiation, hair loss—the works.
"Okay," I thought. "Time to make another deal with myself." I asked my sister to undergo genetic testing. I reasoned that if she tested positive for the breast cancer gene I could let myself off the hook big time since I tested negative. I could assume it was hereditary and I escaped.
If she tested negative I would assume it does run in our family and they just haven’t identified the genetic code for this kind of aggressive familial breast cancer. In that case I would have a prophylactic double mastectomy.
She tested negative.
I knew I was next.
And finally, that was what led me to this decision.
