Andrea Walens, PhD, is a 29-year-old BRCA1 previvor located in North Carolina. She is a cancer researcher, cancer caregiver, and a cancer research and patient advocate. She is also an outreach leader, peer navigator, and patient advocate leader for Facing Hereditary Cancer Empowered (FORCE). Dr. Walens enjoys spending time with her husband and her dog Sadie, visiting family, hiking in state and national parks, baking, and taking care of the many plants she accumulated over quarantine. View Dr. Walens’ disclosures.
I remember the call like it happened yesterday: “Andrea, you have your mother’s mutation.” In that moment, I felt my life shifting below my feet. From then on, everything would be different, all because I inherited my mother’s BRCA1 genetic mutation.
I was 22 when I was diagnosed with a BRCA1 mutation, which is linked with an increased risk of breast cancer and other types of cancer. My diagnosis was followed by a slew of doctors’ appointments full of questions about my future plans for cancer screenings and preventive surgeries. I was told that I couldn’t do much until I was 25, which was when I could start undergoing breast magnetic resonance imaging (MRI) every year until age 35 or so. Then, I would switch to alternating mammograms and MRIs every 6 months.
I was also told that, at some point, I could undergo a prophylactic double mastectomy, which is the removal of both breasts to prevent the development of breast cancer. The original advice I received was to wait to get the operation until after having children so I could breastfeed. At the time, I had no clear plans of marriage or having children, and the thought of waiting until that unknown time was extremely nerve-racking for me. Choosing to undergo surgery is an extremely hard and personal decision, and it is not right for everyone. I felt confident that I would be well taken care of with the screening protocol my doctors recommended, but I knew that one day, I would be ready to have my mastectomy.
Deciding to get a prophylactic double mastectomy
My mom was 46 when she was diagnosed with breast cancer, a disease she had been working hard to prevent since her own mother’s breast cancer diagnosis at age 46. It wasn’t until a few months into her remission that we learned that the cause of early death for generations of women in our family was a BRCA1 mutation. After being re-diagnosed with stage IV breast cancer, my mom would only live a few months past her 47th birthday. Her courage to get genetic testing and her experience as a cancer survivor drive every decision I make to this day.
The longer I sat with my mutation, the more I wanted to have some control over an uncontrollable ticking time bomb. When I turned 28, I decided I didn’t want to wait any longer, and I scheduled my prophylactic double mastectomy. After months of research and reading about other people who had children post-mastectomy, I decided it was the best decision for me.
I turned 28 in March 2020, and as we all experienced, the world changed drastically due to COVID-19 shortly after my birthday and my decision to get the surgery. Trying to schedule a preventive surgery in the middle of a pandemic was not easy, and I faced many obstacles in getting it on the calendar. Finally, in June, I had a date for my surgery: August 19, 2020.
“People who inherit a BRCA1 or BRCA2 mutation have the options of MRI-based breast screening or prophylactic mastectomy to manage their cancer risks. Both are effective strategies, and it is important that they receive the information, support, and time they need to decide on a strategy that works best for them.” – Allison W. Kurian, MD, MSc, Professor of Medicine and of Epidemiology and Population Health at Stanford University Medical Center and a Cancer.Net Specialty Editor for Breast Cancer
Preparing for my prophylactic double mastectomy
In preparation for my surgery, I immersed myself in community resources like the FORCE boards, the Young Previvors Facebook group, and other social media groups for previvors. A previvor is someone who is at greater risk for developing cancer due to an inherited mutation or condition. I wanted to hear stories about the good, bad, and ugly of getting a prophylactic mastectomy.
I decided that to prepare for the physical components, I would work on strengthening my arms, chest, and shoulders in anticipation of the months of inactivity that would follow the surgery. But, in doing so, I realized that it was most important to prepare for the mental and emotional aspects of recovery. I was going to be losing parts of myself to save my life. The grief of that loss, on top of the loss of my mother, was a lot to bear emotionally. I was able to take advantage of free counseling services through the cancer center where I was receiving my care. All of these things were extremely helpful in preparing for life post-mastectomy.
Experiencing relief after my prophylactic mastectomy
The recovery from surgery was intense, but I thankfully had an amazing support system both locally and across the country. My husband was my main caregiver. He gave me my pills on a schedule, emptied my drains, helped me shower and get out of bed, and made sure I ate. I was so fortunate to have such a supportive partner by my side for the first few weeks after surgery.
The most amazing moment after my surgery was the day I received my pathology report. It showed no signs of cancer. This news was proof that I made the right decision.
Although my risk for breast cancer is not zero, it’s now lower than the average person’s. I was given a gift that I wish I could have shared with all the women who passed from breast cancer in my family. I was given a future to look forward to with my husband, my future children, my family, and my friends. It took many months and therapy sessions before this fully sunk in and my mind was freed from the shackles of a potential future breast cancer diagnosis.
If there’s anything I can share to help my fellow previvors, it is this: the decision to undergo a prophylactic mastectomy is a huge, life-altering decision. Find your support group, whether it is your family, your friends, your local FORCE group, or a fellow previvor on social media. I wouldn’t be where I am today without the support I received from my network. I may not be fully used to my new body, but I will never regret the decision I made to give myself a better shot at a healthier and brighter future.