By Sara Schub, who is 45 years old and currently living in New York City. She has a Master’s degree in Public Health from Columbia University and works in healthcare administration. She also counsels women at risk of HBOC and volunteers for various health-related charities.
In early 2011, at a routine appointment with Dr. Monica Prasad, she asked me how I was doing. I took that as an opportunity to tell her what was weighing heavily on my mind – my mother and my cousin were both recently diagnosed with cancer and undergoing chemotherapy. She immediately inquired about my family history of cancer and for the first time I realized how prevalent cancer was in my family. Dr. Prasad suggested I go for genetic testing because I might be at high risk of developing the disease, so I went to a genetic counselor at Mount Sinai. I told her what I knew about my family history, she drew my genetic family tree, enumerated the various genetic mutations that were possible, and recommended genetic testing.
When the test results came back, I was stunned. The genetic counselor told me that I tested positive for the BRCA1 (BReast CAncer susceptibility gene) mutation common among Ashkenazi Jews. She explained that 1 in 40 Ashkenazi Jews has a BRCA mutation. I just became that “one”. She told me that I have up to an 87% risk of developing breast cancer, and up to a 60% risk of developing ovarian cancer. My options were surveillance (mammograms & MRI), chemoprevention (medications to reduce breast cancer risk), or preventive surgery. I went home to call Dr. Prasad’s office to set up an appointment to discuss the findings and was given an appointment for the following day.
Dr. Prasad sat with me for what seemed like an eternity. She explained the test results, confirming everything the genetic counselor had said. The compassion and empathy she demonstrated towards me was unparalleled. There were pros and cons for each of my options. If I chose surveillance and then developed cancer, there’d be no guarantee that it would be detected early enough to cure. I just couldn’t take that chance. If I chose chemoprevention, and endured the myriad of side effects that come along with it, my risk would have been reduced, but still too high for my peace of mind.
I went for a second opinion. And then a third. They all presented me with the same statistics.
I looked at the data with a scientific eye, without emotion clouding my judgment, and arrived at the decision easily. It was all about the numbers. The general population has an 11% chance of developing breast cancer. I had an 87% chance. That’s pretty much 90%. And 90% is way too close to 100%. Not to mention the 60% chance I had for developing ovarian cancer compared to the general population’s 1.5 %. There was only one option for me – preventive surgery.
I took out a notebook and started planning.
First I went to a fertility specialist to freeze my eggs. I gave myself hormone shots twice daily for two weeks and on July 6, 2011 I underwent the egg retrieval procedure. They are currently frozen in storage. Then, on August 1st, Dr. Prasad performed the oophorectomy, leaving me with barely visible scars. I was very comfortable with her and with the staff at The Mount Sinai Hospital. On August 30th, I had prophylactic nipple-sparing bilateral mastectomy with reconstruction.
During my recovery, I reached out to my Aunt, my dad’s sister, to bring her up to date. I wanted to be able to tell her my story in the past tense because of my cousin’s ongoing battle with metastatic breast cancer.
Aside from support, she also provided me with a more extensive family history. I knew that my father had prostate cancer when he was 58, and that my grandmother died from ovarian cancer when she was 70. What I didn’t know was that my grandmother’s sister and mother both died young from breast cancer, and that her brother died from gastrointestinal cancer. I never realized how much cancer was on my father’s side of the family.
I inherited the BRCA mutation from my father; my mother tested negative. Many people don’t realize that everyone has BRCA genes and anyone, female or male, can have the mutation and pass it on, and that men with BRCA mutations are at increased risk for breast, prostate, and other cancers.
Today, I am fully recovered, happy, and cancer free with a whole new perspective. I am more sensitive to people struggling with serious health challenges. Having the support of family and friends is important, but even more so is the need for humanism in the doctor-patient relationship, and in healthcare in general. Dr. Prasad and the staff at Mount Sinai Hospital exemplified that ideal. They treated me with compassion and empathy throughout my BRCA journey.
I’ve also learned that not everyone is always so kind. I’ve definitely had to endure my share of negativity and pushback from people. I guess that’s par for the course. I’m telling my story in order to spread awareness about hereditary breast and ovarian cancer. Put on your pink and teal ribbons. But don’t stop there! Women with a family history of cancer should talk to their doctors about genetic testing. Knowledge is power. Women who are BRCA carriers have options. It is my sincere hope that my story will inspire other women to take control of their health.
I credit my cousin Lauren with saving my life. We were never close, but she was very open about her story, and was always in my thoughts and prayers. Although it turns out that she tested negative for the BRCA mutation, it was because I was thinking about her that I mentioned anything about cancer to Dr. Prasad that day. Now hardly a day goes by that I don’t talk to Lauren and I am so thankful.
Looking back four years later, I have no regrets. In fact, I feel empowered. Bulletproof. No waiting for the other shoe to drop. No impending sense of doom. Now, my risk for developing breast and ovarian cancer is lower than that of the general population. I can live with that. Literally!
Sara, Thank you so very much sharing your story with me. I had no idea you were going through such a life changing ordeal. You are clearly an important source of strength and courage to both men and women. I will look forward to hearing from you.
Much Love,
Dickie