I’ve never been a gambler, but 50/50 odds seem pretty good, until they’re not. My Mom was diagnosed with breast cancer at the age of 50. Based on her age, the cancer type being triple negative, and a strong family history of breast cancer, her oncologist suggested she be tested for BRCA mutations. It turns out she is BRCA1+, meaning I had a 50/50 chance of also having the same mutation. I received my BRCA1+ results on May 14, 2014. The thoughts I had tried to push out of my mind came rushing to the forefront. Did I already have cancer that I was unaware of? Did I pass this mutation on to my own children? How would I tell my mom, who was in the middle of chemo treatments?
My statistics as a BRCA1+ woman were 87% chance of breast cancer in my lifetime and 40-60% chance of ovarian cancer. I already knew my options: surveillance or risk reducing surgeries. I never had any doubt that I would go the surgical route. It was my best chance at reducing my risk as much as possible and that was the only option I could live with. This would mean a total hysterectomy and removal of my ovaries and a prophylactic double mastectomy, with the option of reconstruction.
There are so many levels of guilt involved when you find out you are BRCA+, but have not yet been diagnosed with cancer. I wondered why I had gotten so lucky, but not my mom, my grandmother, other family members, or even other survivors in general who had not been fortunate enough to have this life saving information. I felt guilty for having surgeries that were not absolutely required, what if something did go wrong and how would it impact the lives of my husband and children? I was uncertain how it may affect intimacy with my husband. It is such an awkward space to be in sometimes, as well. Waiting for appointments amongst patients receiving treatment for cancer, being somewhere in between perfectly healthy and a cancer patient. The list could go on, but once I began looking at it as a blessing, instead of a curse, my focus changed dramatically. I realized I could use my own situation to educate, advocate for others, and raise awareness about what BRCA mutations really are. I wanted to be a source of hope and reassurance for other women facing the same decisions. The misinformation is astounding and there is also an unexpected backlash. Even though Angelina Jolie has done so much to raise awareness for the BRCA/HBOC community by discussing her own choices so candidly, it has also created a negative tone among many who are uneducated about the risks involved with BRCA mutations. One comment I saw that stuck with me, “Maybe she will have her brain cut out next, oops, too late.”
Deciding to have a double mastectomy when you don’t have cancer is a very difficult decision to make and even harder to explain. Many people are uninformed and think you are overreacting or taking “drastic” measures. The majority think it means disfigurement or unnecessary risk. I didn’t feel like I was allowed to express any fear or anxiety and I felt tremendous guilt because, after all, it was my choice and I certainly didn’t feel entitled to any sympathy. So the majority of my decision making process was done alone.
I scheduled a consultation with the best plastic surgeon available in my area, though her only option for reconstruction was implants. Someone told me that when trying to decide on a plastic surgeon, look at their shoes and office. She said if they wear nice shoes and have a fancy office, its a sign they are a perfectionist and thus, a quality surgeon. This surgeon was not confident and she asked me twice if I was certain I wanted to “do this to myself.” Of course, I knew I needed to do this FOR myself, so I began gazing at her shoes and then at the walls, looking for hope. I left the appointment feeling defeated and frustrated. I began researching another option, DIEP Flap reconstruction. DIEP Flap is a type of breast reconstruction in which blood vessels called deep inferior epigastric perforators (DIEP), as well as the skin and fat connected to them, are removed from the lower abdomen and transferred to the chest to reconstruct a breast after mastectomy. I knew it would be a huge surgery with a lengthy recovery. I also knew it required highly experienced and qualified plastic/micro surgeons to get it right.
A friend referred me to Midwest Breast and Aesthetic Surgery. I was so inspired by her trust in them, that I knew I had to at least give it a shot. The confidence from these surgeons was palpable, as was their compassion. It was so reassuring and encouraging. They were informative and realistic, but fully certain I would be just fine. I knew I could trust them with my life. They are impressive on paper for sure, but the skill and care they provide are unparalleled. They replaced my fear with hope. When I left, I felt like I could actually breathe for the first time in months and I never once had to look at their shoes!
I believe in silver linings and I have discovered strength and confidence I never realized I possess. I even recently accepted an offer to work for my amazing surgeons at MBAS as a patient liaison to help guide other patients through the process of reconstruction. I had no choice in being BRCA1+, but I did have the choice to do something about it, which is a privilege denied to so many before me. I chose to be proactive and I will never take that opportunity for granted. I’ve done the best I can to dramatically reduce my risk of getting cancer, which is a huge relief and priceless gift to my family and myself.