Michelle's "I am Oneinforty" Story
I grew up in Caracas, Venezuela and migrated to the US in 1994. I used to say I knew I was going to have breast cancer – I just did not know when. You see, I am the Jewish daughter of an Ashkenazi mother who had Stage 1 breast cancer at age 49. When I was just five years old, her mother passed away at age 65 because breast cancer that had metastasized. In addition, my own father died at age 57 of prostate cancer that had also metastasized to his bones. So for me, it was just a matter of time.
My mother got diagnosed when I was 29, a year after I got married. Her cancer was only as big as a grain of rice, so she was advised to only have a lumpectomy. She had radiation and chemotherapy and stayed on tamoxifen for five years. She fully recovered and went on with her life. Two years after her surgery, my father complained of back pain as they were returning from a trip to Europe. He went to see his doctor and was shocked to find he had a cancer that had metastasized to his back and his bones. His PSA was over 100, but he had never been advised to get the PSA checked before. His journey with the disease lasted four years.
I proceeded to have three kids within five years, and feel fortunate that the first two got to meet my father. He died when my daughter was turning one. I enjoyed breastfeeding for a total of five years combined, and was hoping that this activity was going to help reduce my risk of breast cancer. But as I was weaning down our third child from breastfeeding, my ob/gyn recommended I pursue gene testing based on my family history. I tested positive for BRCA-1, and within three weeks made my decision to have prophylactic surgery. My mother could not understand why a healthy woman would choose to undergo a procedure as drastic as a PBM. But after I convinced her to take the test, and after she also tested positive, she knew I would be hard to dissuade. I had a PBM (prophylactic bilateral mastectomy) in 2009 – three months after the genetic test – and a BSO (prophylactic bilateral salpingo-oophorectomy) in 2016 (in this case, I chose to wait until I was closer to natural menopause). My mother chose to have the salpingo-oophorectomy soon after I had mine, once she realized the recovery was relatively easy.
The thought of telling all my cousins was not easy for my mother to understand. We had a number of debates before I convinced her that I would not be at peace if I didn’t encourage them to get tested as well. Luckily, only one of my cousins has tested positive. In the time since, I have become an advocate and an open book about my experiences. I joined the local chapter of Force and went to meetings to help women weigh the difficult decisions ahead of them. I also openly discussed the topic at my workplace, and offered advice whenever someone would get diagnosed with breast cancer or take the test.
I am a “Previvor” and beneficiary of great advice and supportive family and friends. My mother is still alive and kicking. I remain optimistic that my kids will have more options when they grow up. They know they are at a higher risk, but I am not pushing the testing until they become adults. You only get to live life once, so it is very important and very personal to stay abreast of the newest research and support everyone in their personal journey.