Stephanie, a mom of two and wellbeing advocate, made the brave decision to have a preventative mastectomy and hysterectomy after her father tested positive for the BRCA2 gene. Her previvor story sheds light on genetic testing & shares the decision many people face with strong family histories.
My grandfather had breast cancer. And his father had it, too. They had identical symptoms — an inverted nipple which caused alarm to seek care. My grandfather had a bi-lateral mastectomy followed by five years of tamoxifen to rid his body of cancer.
After facing breast cancer, he was diagnosed with the BRCA2 gene mutation and was told it may be genetic.
When I learned this, I was very interested in finding out what I could do to avoid going through what he experienced. My husband and I had a 1- and 3-year-old at the time, and I didn’t want to live through cancer. I wanted to experience a different path.
I was blessed that my father was willing to be tested for the BRCA mutations. Since my grandmother, having beaten breast cancer, died when he was 14 from cancer, he did the comprehensive test to see if he was positive for either BRCA 1 or 2.
He was positive for BRCA2 alone. I was now mentally ready to test. I wanted to know what more I needed to do to prevent this disease.
I am the oldest of five kids in my family and four of us have tested for BRCA, with two positive and two negative. I can’t emphasize enough how much of a personal choice it is to get tested.
Getting tested is a huge decision because it impacts your entire life. That can feel scary. I try to remind myself: Fear doesn’t serve you, but information and love do. Love yourself enough to do what feels best, and you will be on solid ground no matter what.
With that mindset and the support of my family, I got tested.
I tested positive for the BRCA2 mutation. Then I had to make a choice: prophylactic surgery or mass surveillance.
I wasn’t interested in surveillance, which meant alternating cat scans and MRIs every six months. I didn’t like the idea of waiting for cancer to be found. So, when the call came with my results, I was prepared with a decision: surgery. My husband and I wanted to continue to build a happy and healthy life, not one with fear of cancer. This was the first step in creating that life.
Building a happy & healthy life
My surgery included a double mastectomy, hysterectomy, and the beginning stages of breast reconstruction. I remember the first week or two out of surgery being uncomfortable, but not unbearable. The main problem was that I felt pretty good, so it was easy for me to overdo things. That was the case after the drains came out.
Something I didn’t anticipate was how uncomfortable it would be to expand my chest cavity for breast reconstruction. I stopped after two “fills” because I just couldn’t take it any longer.
Emotionally, I held up pretty well. I heard a lot of “you are so brave,” and I kept thinking “compared to what?” There are so many people who have to endure so much more heartache, loss, and pain than I ever did. I felt like I got off kind of easy! I made a choice for my wellbeing, and not because I was forced into it by this awful disease. I got to make a choice for better health, not to save my life.
Conquering breast cancer & risk factors
I feel blessed that I was able to make proactive choices about my future, all thanks to my dad’s decision to get tested. He saw his father beat breast cancer, skin cancer, and endure the loss of his wife to cancer. When my grandfather passed in 2019, I was flooded with memories and thankfulness for all that he gave our family.
There is a stigma for some men about breast cancer or being too tough to see a doctor. The idea that a man can have breast cancer is not as publicly discussed, but it happens.
Social media seems to have helped bond some of the men who do have to go through this together, whereas when my grandfather went through it, I’m not sure he knew one other man going through the same thing.
The advice I’d share with people in a similar situation is inspired by the strongest men I know: Don’t forget who you are. You are not this diagnosis or disease. You have the ability to help your body and mind do wonderful things.
National Breast Cancer Foundation is here for you and your loved ones. Whether you need support, education, or help during treatment, we have a team dedicated to get you the help you deserve.