To: The People I Love
Friends and Family-
I want to share an important decision I have made. At 37 years old, I am undergoing a preventative double mastectomy with reconstruction and a prophylactic hysterectomy. This surgery will ultimately enable me to defy my destiny. I want to share this with you, the people I love the most, since I 100% believe that knowledge is power.
My maternal grandmother, who I never met, was diagnosed in her 30s with breast cancer and died at 37. My mother was always diligent about mammograms and was always nervous about breast cancer. It was not until she was diagnosed at age 50 with stage 3c ovarian cancer in 2002 that she learned about the BRCA gene mutation, specifically that she was a carrier of BRCA-1 which affects the body’s ability to suppress tumors in the breast and ovaries. This past summer, I learned I was also a BRCA-1 carrier.
The facts are this: I carry a lifetime risk of around 87% of getting breast cancer and around a 54-60% chance of developing ovarian cancer, the latter of which happens to be the deadliest and hardest to catch of all cancers in women. Even worse, women with the BRCA-1 gene are more likely to develop these cancers before menopause. To put this in perspective: the normal population has a 13% lifetime risk of breast cancer and 1.5% chance of ovarian cancer.
My mother’s gift to Stacey and I was the knowledge that she was BRCA-1 positive. Stacey and I made a pact to only do the BRCA test after we were done having children. Prior to that, we were regularly screened with CA-125 blood tests and transvaginal ultrasounds from the time of our mother’s diagnosis- the only tests currently used for ovarian cancer- but neither is particularly effective in detecting what is often referred to as the “silent killer” of women.
Six months ago, Stacey tested negative for the BRCA gene mutations. We were so relieved. I always felt I was positive, even though one has nothing to do with the other. I felt I had my mom’s genes – I have her funny thumbs and her body type (minus the gym addict in her). Sure enough, I tested positive for one of the three gene mutations affecting Ashkenazi Jews. Another startling fact: 1 in 40 Ashkenazi Jews carries a BRCA gene mutation- nearly 10 times the rate of the general population- making Jewish families dramatically more susceptible to these diseases.
Now that I have this information, I wasted no time in dealing with my reality. I will undergo a hysterectomy at NYU on September 4th, the eve of Rosh Hashanah. I feel good about this date as my new chance leads me into the Jewish New Year. The surgery will be done laparoscopically and I will be released the next day. I will be able to walk the next day and hopefully feel well enough to work that next Monday. However, I cannot pick up Billie and Blake for 4-6 weeks post surgery. A small, small price to pay for my future. I will undergo a double mastectomy with reconstruction at NYU in early January (the recoup from this is actually more intense than the hysterectomy). A second procedure called an “exchange” will be performed several months later to insert permanent implants (that’s an out-patient procedure). Doing these surgeries will reduce my risk of related cancers to less than 5%.
The hardest part of all of this for me is the fact my mother only knew about the BRCA test AFTER she was sick. There I was taking this genetic test at 37, knowing that I possibly had this issue, and all it took was swishing around mouthwash and spitting it into a test tube. How I wish my mom had that chance. She would have been around to see me marry Josh, Stacey give birth to Dylan, me give birth to Billie and Blake and how she would have loved to see her first granddaughter (the light of her life) grow into the most beautiful five year old I know. How I wish she had the chance I have.
You will ask me what you can do. My biggest hope is that you learn, share the information and get tested if you need to. What else? Not much, Call Josh and see if he needs anything if I am driving him crazy.
I am good, I promise. I have been given a crystal ball to see my future. I am lucky- I believe this. Am I scared? Some days, yes, but so worth it. I have the strong support of my husband, my dad, my amazing sister, brother-in-laws and sister-in-law, my in-laws, my extended family, my beautiful friends and the new friends who are on the other side of this. I also have the memory of my mother’s strength, her unbelievable will and her kick-ass attitude. I hear her voice in my head daily: I can do this. She is, and was, my hero. My mother was not given this chance therefore I must take it. I must do this.
I also have Josh, Blake and Billie… I don’t need another reason than three of them. They are everything.
I love you all.
Thank you for loving me.