I have the BRCA1 Mutation and made a difficult choice.
There are moments in life when you remember each detail as if it happened in slow motion. These are cemented in your mind as ‘before’ and ‘after’. I remember standing in my bedroom when I received the call. I was getting ready for work and as usual, I was behind. I was scrambling to prep things for my 6-month-old and find everything I needed to get out the door.
When I answered the phone, I knew the news wasn’t good before she said it.
Her tone gave it away. Before that call, I was a 29-year-old carefree wife and mother. After the call, I was a 29-year-old wife and mother who had a genetic mutation. A genetic mutation that would impact my health and our family.
That was the day I discovered I have a BRCA1 mutation.
This is a mutation in my genes that significantly increases my risk for breast and ovarian cancer. A mutation that brought with it major decisions about my future, frequent testing, and immediate discussions regarding having more children. It also came with a lot of fear and anxiety. During the period right after I found out, it felt like my body had betrayed me. On one hand, my body was providing food and nutrients for my child, I never felt more powerful. On the other hand, it sounds cliche, but I felt like a ticking time bomb. The very same body that was providing for my child, could potentially take me from him. While that is always true of life, it had never felt more real.
WE'RE HONORING THE WOMEN FIGHTING CANCER:Ellen's Story
I inherited my BRCA1 mutation from my mom. When I was a child, she battled breast cancer. I remember bits and pieces of that time. It’s funny how memories work when you are little. I remember the smell of the hallway where we would pick up dinner from the kind older lady. I remember extra stays at my dad’s house. Trying on wigs with our mom and the kind man that told us about the goats on his farm in the doctor’s office waiting room. Partly, she shielded us from the difficulties of the experience. She has a knack for turning everyday life into a reason for joy. Looking back, I see the exhaustion that led to someone else cooking our meals. The hospital stays that led to staying extra nights with our dad. She never lost all of her hair thankfully, but we looked for wigs as it thinned just in case. As we socialized in the waiting room, our mom was getting radiation treatments.
She’ll be 25 years cancer free this year. Her story offers hope
and while I wanted to live in that hope, I also knew that the breast cancers associated with a BRCA1 mutation are more likely to be triple negative, aggressive, and difficult to treat.
I knew that for a woman with a BRCA1 mutation, the risk of developing breast cancer before age 70 was greater than 50%. Often even younger than that. My mom was 35. I knew even if the cancer was treated, the risk of developing a secondary breast cancer within 5-10 years was high.
BRCA1 Mutation
When I received the call letting me know that I also had a BRCA1 mutation, I also instantly knew what I would do.
BRCA1 Mutation
I didn’t know when, but I knew that I would have the surgery. I would make the decision to have a prophylactic mastectomy. That decision is deeply personal and not everyone makes the same choice. Some opt to continue frequent testing longer than I did and while others feel frequent testing is enough and that they will battle cancer if and when the time comes. I think our stories are shaped by so many things, but those stories ultimately lead to the decisions we make. Our past experiences, our faith, and how we have learned to process what life throws at us, determines what we will do next. For me, knowing the risk was a gift. I was given the chance to write a different story. To have a surgery that would decrease my lifetime risk of breast cancer from over 50% to less than 2%. Last year, at 32 years old, I had a prophylactic double mastectomy. It was the hardest thing I have ever done. I weaned my second child right at 12 months to prepare for my first surgery and then had a second major surgery just 5 months later. After each surgery, I couldn’t lift my 1 and 3-year-old boys for almost 6 weeks. Recovery was difficult and painful. My mom lived with us for a month and took care of our children. The wonderful community around us cooked meals and checked in on us. We couldn’t have made it through that time without them. A year later, I am still not happy with how my breasts look and they don’t quite feel like my own. I will never have feeling in them again or be able to nurse any subsequent children we may have. Having a mastectomy wasn’t an easy process. I wouldn’t wish this journey on anyone. While it is the hardest thing I have ever gone through, it was the result of one of the easiest decisions I have ever made. My mom and I share a BRCA1 mutation. Being a part of her story and watching what she went through, allowed me to make the best decision for myself and my family.
