My mom used to tell me that if she hadn’t literally seen me come from her body that she would never believe the two of us were related. Others would share that same sentiment my entire life. She was taller, had a wide frame and was of a heavier build. I am petite, with a small frame and short. She had brown hair and I have blonde, you get the idea. There were specific hereditary attributes about my mother that I didn’t have, so there was always a part of me that assumed I didn’t share the genetic mutation with her. It was a ridiculous non-scientific assumption, but it was just one of those things you tell yourself to feel better.
I remember, in 2008, my mother sitting me down at the kitchen table to explain genetic testing and that scientists were starting to discover specific genes linked to breast cancer they were calling “BRCA”. Back then, genetic testing was very confusing because insurance companies could and would drop you if they determined this to be a “preexisting condition”. There was, however, discussions going on in Congress at the time to get that changed (which they did). My mother did a great job of keeping herself informed and helped to educate me on how I should navigate my own situation.
I always knew my own journey had to start with me being tested. This would greatly affect my next steps in terms of being proactive about my health, and it would determine what kind of surveillance I needed. For people who have a heavy history of breast cancer in their family, there are programs known as “high-risk” surveillance. This means that you get a mammogram, MRI, or ultrasound (depending on doctor recommendations and your own personal decisions) every 6 months instead of once a year. It also means not waiting until you’re older to start getting regular mammograms.
Because my mom was BRCA positive, I had a 50/50 chance of getting the gene myself. Looking back now, I honestly believe I would have been more frightened if I had tested negative for the gene. I know it sounds crazy, but because of the education my mother gave me as well as my own research, I felt more prepared to test positive. Testing as a “true negative”(An individual who is not at a higher risk for breast or ovarian cancer than the general population) for someone with my history, felt like a ticking time bomb just waiting for the cancer news to drop. For many people, testing as a true negative leads them to believe they are “safe” and their chance of cancer drops. While it’s true your risk does go down if you do not carry the gene, there is still a large percentage of the population who get diagnosed with cancer without the gene and without a family history of cancer. So the advice I would give to anyone is never assume and always be proactive. Make sure you are getting the appropriate surveillance and that you pay attention to your own body. No one cares more about your health than you. Period.
My mother got tested in 2008 and passed away in 2011, but I did not get tested until 2015. So why did I wait so long to get tested? Well to be honest with you, I wasn’t in a hurry. It sounds weird for me to say now because I would encourage any woman with my family history to get tested as soon as possible. In the years following my mom’s death, I paid close attention to my body, I was healthy, ate relatively well and exercised regularly. I am also not obese, a smoker or an alcoholic. There wasn’t anything about my lifestyle I could change to offset what was already written in my DNA. It wasn’t until I turned 30 and got married that I finally decided it was time to be proactive and get the answers that would affect so many aspects of my life going forward. It was no longer just about me. Testing positive would determine a lot of things, specifically a time table for my husband and I to have kids. These were now the kinds of decisions we were going to have to make together.
I can’t say I was completely shocked to hear the news that I was positive, although it still stung. It reminded me of that feeling of knowing for sure you failed a test and then having it confirmed when you actually see that “F” written in red at the top of the paper. I really hated the idea of having to tell my family the news. You have to understand that I am the type of person that always wants to take care of business without having to worry anyone else. But I knew that this wasn’t the kind of issue I could just “handle” all by myself. I would have to tell my new husband of not even 5 months that my chances of getting cancer just increased astronomically. How would he react? I would have to tell my father, who already lived through the nightmare of losing his wife, that his only child unfortunately had more in common with her mother than she thought. Would he be able to handle it? And finally, should I burden the rest of my family and close friends with this news right around the holidays?These are the kind of questions that ran through my head over and over as I digested the results of my test. Of course I knew that my family and friends would support me, but it was still so hard for me to burden them.
I am the type of person that likes to know exactly what I am dealing with so I can do research, make plans and make the most informed decisions. Learning that I was positive meant I now had a sense of direction. This was just the beginning. It’s time to start rolling out the plan my mother helped me make all those years ago at the kitchen table.
