Every October our community goes all out pink to drive awareness for breast cancer. It is a bittersweet reminder I am not a breast cancer survivor, but I am a survivor in my own right. Three years ago I took preventative steps to ward off cancer including a double prophylactic mastectomy with reconstruction and a hysterectomy. My scars are almost invisible now, back to flesh tone and the feeling in my breasts has returned. My breasts look fantastic, and I am in awe of the medical advances made!
If you knew you had more than a 50% chance of winning the lotto would you play?
I don’t watch a lot of television, and if Brad Pitt knocked on my door I wouldn’t even know it! I did, however, pay close attention to Angelina Jolie in 2013 when she went public about being a BRCA1 mutation carrier and openly discussed her mastectomy and reconstruction. I recall the strange oh shit feeling that overcame me and how I knew I was positive before the test even came back and sure enough through genetic testing, I learned that I was indeed a carrier of the BRCA1 gene mutation and have an 80% likely chance of developing breast cancer and a 44% chance of developing ovarian cancer.
To minimize my risk of ovarian cancer, it was recommended I have a hysterectomy since currently, there is not a good way to screen for ovarian cancer. In 2014 I went under a full hysterectomy, and I then had another agonizing decision to make — go under high surveillance screening for breast cancer which includes an annual MRI and mammogram, take tamoxifen for the rest of my life or have a prophylactic mastectomy with reconstruction (covered by insurance). After my oncologist, Dr. Corgan passed away from breast cancer in early 2015 at age 44, the decision became clear, and I opted for surgery. It is hard to believe in this day and age that cutting off body parts is our best defense against cancer.
While the surgery(s) itself were uneventful and I had a speedy recovery(s), I was not prepared for how my body would respond to being forced into menopause in my 30’s. I was not ready for the “foggy” brain, dramatic mood swings, and sleepless nights as a result of the onset of many food allergies triggered by my autoimmune response. I was not prepared for chronic nerve pain that presents itself in an itch in my upper arms that I will depend on medicine for the rest of my life for relief.
Most importantly, I learned my two boys have a 50% chance of having a BRCA gene mutation which means an elevated risk of developing prostate, pancreatic and breast cancer.
So, if I had the chance to go back in time would I still have gone through the preventative surgeries? Absolutely yes! Knowledge is a gift, and I have so much gratitude for. Too many women have passed away from an aggressive form of cancer and had they had this knowledge it could have made a difference for their survival. For women in the same predicament, my advice is:
Ask your doctor(s) to monitor your hormones closely. I am three years post op now and still struggle with getting my hormone levels right.
Be thankful for your body, treat it well by eating right and exercising! No matter how I am feeling or little sleep I have, I will make it to the gym nearly every morning.
To the other women who have had a hysterectomy — we are at a high risk of developing osteoporosis; start running! It is the only cardiovascular activity that will build up bone density.
You know your body better than anyone else. If you sense something is off, it probably is. Keep the communication lines) open with your doctor(s) and discuss all symptoms, no matter how minor, you experience.
I hope by publically writing about my experience, I can help drive awareness of genetic cancer and how vital funding research is to eradicate this heartbreaking disease. The fight against cancer is very real.
Originally published at medium.com