I am high-risk for breast and ovarian cancer, a piece of information I discovered by a fluke back in 2013.
Before Angelina Jolie made headlines for her prophylactic double mastectomy, and before testing for cancer genes became a common practice, my family learned the BRCA-1 genetic mutation runs in our family.
We found this out in a roundabout way, when my then-80-year-old maternal grandmother suffered her second bout of breast cancer. Her doctors tested her for a handful of genes, including BRCA. Considering she first had breast cancer in her late 50s and that there is no history of ovarian cancer in the family, it was a surprise to learn she was positive.
When we learned my grandmother was BRCA-1 positive, my mother, sister and I began considering what steps — if any — we were going to take. The default option, it seemed, was a double mastectomy and complete hysterectomy.
But that option didn’t take into account that we were all at different stages in our lives. My mother was 58 with three grown children, my sister was a 22-year-old recent college graduate, and I was a 26-year-old newlywed contemplating starting a family. My brother was a senior in high school.
My mom immediately got tested because if she wasn’t a carrier, it was a moot point for all of us. Unfortunately, her test results were positive.
She visited several different doctors and eventually followed a course of action that allowed her to confidently move forward with her life. Instead of a undergoing a prophylactic bilateral mastectomy, she opted for increased surveillance that includes an alternating mammogram and MRI with contrast every six months.
As a result of her heightened surveillance, she was diagnosed in 2016 with Stage 0 breast cancer that was eliminated with a lumpectomy followed by radiation. The doctors felt the type of cancer she had was probably not one of the cancers associated with BRCA-1 mutation.
She now continues the surveillance process with the understanding that if anything else is discovered, she will need to take a more aggressive course of action, such as a bilateral mastectomy.
Because there isn’t a solid screening process for ovarian cancer, my mom decided to get a prophylactic salpingo-oophorectomy hysterectomy, removing her ovaries, fallopian tubes and uterus. Because she was done having children, she felt there was no reason not to immediately eliminate the risk of ovarian cancer, despite it being a tough surgery. My sister also decided to get tested. My brother did not, but at this point in his life, the stakes for him being BRCA-1 positive are a lot lower than for us.
I made a different choice than my mom and sister. Knowing I have a gene that increases my risk of cancer gives me anxiety. Making matters more complicated, I already suffer from anxiety, triggered by health-related issues.
Even writing this story, six years after learning my mother was BRCA-1 positive, I feel my heart beginning to race, worried that by putting my decisions to paper may lead to a poor outcome. I rationally know this isn’t the case, but that’s anxiety for you. Ironically, what doesn’t give me anxiety is the lack of knowledge about whether I have the gene.
For some, knowledge is power, but for me, this kind of knowledge would be debilitating.
Despite those feelings, I still knew I needed to look into all of my options and see what the best path was for me. After thoroughly educating my husband and myself, I’ve ultimately decided not to get tested at this point, a move some may find controversial.
But I want to explain. The way this gene presents in my family is not as a long line of young family members being diagnosed with breast or ovarian cancer. In fact, we are lucky because no one in my family has had pre-menopausal breast cancer.
I am a young, healthy woman, who at that time, didn’t have children but knew I wanted them. I decided to put my decision on the backburner and went on to have two healthy daughters. I also chose to breastfeed both my daughters, a move research shows can decrease the risk of breast cancer, and one I wanted to take knowing this gene could be a part of my genetic makeup.
I have since met with a genetic counselor at Johns Hopkins Hospital and learned that until I know for a fact that I’m finished having biological children, there isn’t much that can be done to prevent ovarian cancer.
Also, the available surveillance has the potential to deliver false positive or false negatives. In terms of breast cancer, I can begin regular mammograms and MRIs with contrast or opt for a double mastectomy, both of which have the potential for other long-term side effects.
So I have decided to wait to get tested until after I feel my family is complete.
After working on this series of articles for Jmore, and speaking in depth with my mother about my family history, I even more deeply realize everyone’s decision how to address breast cancer is personal. Every story is different and there is no right or wrong way to handle this topic.
I know I eventually need to get tested, and I will. It’s important for me to know if I am BRCA-1 positive for my daughters and for me, so I know what steps I need to take when the time comes. But I have taken into consideration my doctors’ recommendations, how the gene presents in my family and how I react to health-related issues, and recognize that time isn’t now.