Listen To Your Gut: A Previvor’s Story

My story doesn’t start with me, it starts with my mother. My family is from a small town, near Youngstown, OH.  Growing up in a 100% dominate Italian Family, we were all very close.  Friends were family and the door was always open.  I was your typical child; the oldest of 2 children. In 2000, at 36 years old my mother was diagnosed with Breast Cancer.  At 11 years old, my world changed.  My brother and I were kept hidden from the majority of our mom’s diagnosis.

After the initial diagnosis, a couple years later the cancer returned.  My parents decided to get a second opinion.  Again, my brother and I were shielded, but our mother didn’t show any pain. She made it to every school and sporting event.  She was literally the strongest person we knew.  How does one go through Chemo and Radiation and still smile every day?

At 18, I was applying to college and starting the next chapter of my life.  But things took a turn.  My mother was losing weight and on oxygen all the time.  My mother planned my graduation party for me, 300 people later it was one amazing party.  One week later she passed away on June 29, 2007.  Years later I realized she only made it as long as she did for the party.  As much as that party was for me, it was also for her.

I went to college per my family’s wishes.  I saw a therapist once a week for 4 years.  Life was not easy, but I took what God handed me and made the most of life. In 2007, during my fall semester at college, I had this gut feeling to get tested for the BRCA mutation.  When I finally saw the genetic counselor, the doctor told me to wait until after I graduated college and try to live my life as best I could.  My mother wasn’t tested and we didn’t have any family history (2 or more people with Breast or Ovarian Cancer).  So I did what the doctor told me to do.  Four years later in 2011, I graduated college and landed an amazing job.  I honestly didn’t think I was going to graduate.  It was a rough 4 years but I did it!

In 2014, at 24 I started early screening: mammograms and breast MRIs as well as ovarian testing every 6 months.  Finally in June of 2015 I decided to get tested, the gut feeling was still there.  The doctors thought I was crazy but I didn’t care. Even if I didn’t have the genetic marker, I was still at a higher risk given my mother’s young diagnosis.  So on that day In June of 2015, I gave blood for the BRCA Mutation Test.  One month later I met with the genetic councilor to get my results: BRCA 2+.  Here was my first lesson I learned as an adult:  Self Advocacy.  I was my OWN voice and got tested.  I listened to my gut feeling even when the doctors told me I shouldn’t be tested.

After the realization of my mutation, a couple tears, and 9 holes of golf with my dad 9 (he never missed a doctor’s appointment), I had a lot to think about.  But one thing was for certain, I was relieved to know; knowledge is a powerful thing.   After many conversations and much support from my dad and boyfriend (now husband), we decided to do the 6 month screening.  When my husband and I got engaged in 2016, and our life was moving forward, I started thinking more about our future.  I realized that I didn’t want to live in fear and wait around for the test results.    So, we got married in July of 2017, went on an amazing honeymoon, and then we had a more serious conversation about our future:  do the surgery now or later.  Well, a couple months later in April of 2018 I underwent a prophylactic double mastectomy with tissue expanders and in November of 2018 I had my exchange surgery and received my implants.  The months and days leading up to the surgery were full or emotion:  I felt strong, happy, and smart but I was also scared.  I wasn’t sad about losing my breasts, I was relieved.

After I completed my exchange surgery, I decided I wanted to tell my story. So I posted my story on Instagram and Facebook.  I was a little nervous as I’m a very private person, only close family and friends, and my employer knew about the surgery.  I wasn’t afraid to tell people about my surgery, I LOVED telling my story.  It shows I wasn’t afraid to stand up for what I thought or wanted.  It shows I was brave and smart.  I wish I would have documented more of my journey.  The reason for not coming forward sooner was for the judgment society gives women. The BIGGEST judgement women have against other women – breastfeeding your children.  I didn’t want to hear the just wait so you can breastfeed your children and do the surgery later.  What if I waited and then I got Breast Cancer?

Here’s the thing – WHY does that matter how my potential future children get fed?  Shouldn’t the conversation be – wow you did something brave, you SAVED your life.  I was afraid for the feedback and judgement once I hit submit and then I realized: I saved my life, I’m a Previvor.  And guess what, all the comments were amazing, everyone was amazed at my courage and it started something that many of us weren’t talking about:  Testing.  But here’s the best part of my story:  I WILL be around for my children, my family, and my friends. And honestly that’s all that matters!  I wish what we knew back in 2000 what we know now about testing and preventative measures – it DOES and WILL save lives.  So many many lives.

By Erika McNulty