I am a previvor…and most people don’t know what that means. I am part of the cancer community, but I’ve never had cancer. My life was forever changed based on the probability of having cancer; a simple genetic test started this amazingly wonderful, scary rollercoaster ride. I casually had genetic testing done during an annual exam and my results revealed that I had a 75% chance of developing breast cancer and an 80% chance of developing ovarian cancer within my lifetime. As the daughter of a breast cancer survivor, I always figured I might be susceptible to the disease but seeing the percentage of probability had me frightfully shaken! I have watched my mother battle breast cancer twice and most recently stood by helplessly as my baby sister fought her way through this same dreadful disease. Cancer continues to upset the balance of our family and threatens to disrupt our peace, but what it hasn’t realized is that we are a family of warriors, and these challenges only serve to strengthen us and test our resiliency.
I have spent most of my life waiting on cancer to find me, accepting my fate as a rite of passage like my mother and sister before me, but genetic testing shifted my mindset and totally changed the game. It allowed me to make a proactive decision instead of a reactive one. Deciding to have a preventative mastectomy and hysterectomy was a huge decision. My life was forever changed but in all the best ways! When I considered having the surgeries, I could only focus on what I would lose. I didn’t consider how much I could gain. I fought back and I don’t have to live the rest of my life waiting on breast and ovarian cancer to casually show up and threaten the very essence of me, to stifle my livelihood, or to take my life. I can live in peace knowing that in having the surgeries I reduced my chances of having breast and ovarian cancers to 1%.
My mother had her first bout with cancer when I was in college. I remember calling home to check on her and she would often tell me, “Focus on school, I’m fine”. I was away at school in Missouri, more than 10 hours away while my family was in Texas, but I felt the weight of that experience every day. It was such a scary time for our family. I felt like I woke up each day in a fog and spent most of it holding my breath waiting on a phone call that could change my life forever. I was so young, and also a single mom and I needed my mom more than ever during this time. The rollercoaster of emotions was endless. There were days that I would feel hurt, rage, sadness, and fear, but all the while, my mother relied on her faith, surrounded herself with positive energy and friends, and was fortified and strengthened by this experience. Then ten years later, it happened again. My mother found another lump. As our family braced itself for another rollercoaster ride, my mother was unshakeable and unflappable through it all. She propped us all up and readied us once again for the fight of our lives and we are more than grateful that she came out whole, healed and healthy on the other side. She is the glue that holds our family together and her presence sets the tone for everything that we do in our lives. I am thankful that she is still here to tell her own story.
My mother found both of her lumps through self-breast exams, and she would preach to all of us (her three daughters) religiously about the importance of knowing your body and performing monthly self-exams. She even bought us the tutorial placards with the pictures to hang in the shower and made us practice “finding the pea” in the mock boobs. She was insistent on us staying one step ahead of this dreadful disease. She is the best example of advocacy beginning at home within our own four walls. I am embarrassed to share that I was horrible about self-breast exams. I was so afraid of what I might find. I was crippled by fear and the panic of reliving my mother’s experience. I know that there may be others like me, so I advocate fiercely now for monthly self-breast exams and knowing your body well enough to know “what right looks like”. Awareness is such an important tool in fighting this dreadful disease and it can make a difference in life and death.
My life as a previvor has gifted me with an amazing sense of hope and I see each new day with fresh eyes because I decided to fight for my life, even when it might not make sense to some people. I am no longer haunted by the fear of suddenly finding a lump and disrupting everything that I hold closest to me. I view each day as an opportunity to learn more things and soak in every bit of goodness around me because I have seen firsthand the impact of cancer on a family. Any doubt that I may have had about my decision to have surgery was lifted after watching my mother’s pain as my sister battled breast cancer. I could never watch her go through that again. Each day I am more confident and resolute that this was the best decision for me. I have become a part of an amazing sisterhood and I am encouraged each day by their strength and resiliency.
Through this process, I have watched the best parts of myself unfold. I have uncovered my voice and a passion to enrich, inspire and spread the word about the importance of genetic testing. Preventative surgeries may not be for everyone but having genetic testing arms you with the information to make an informed decision. Knowing allows for consistent and thorough monitoring which helps the doctors to detect breast and ovarian cancer sooner. To me, that’s a game-changer!
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