In my head, I can just hear Jan Brady from The Brady Bunch whining, “Marcia, Marcia, Marcia!” My sister’s breast cancer fight and my act of prevention feels a lot like Jan: we don’t have the “popular” gene in the breast health world.
Now, do not get me wrong, having the BRCA gene is serious and I know something that weighs heavily on your mind if you have it in your family. So my point is not to demean BRCA: it is to show that you don’t have to have the BRCA gene to WORRY about getting breast cancer.
When I began my preventative journey after my sister’s diagnosis, I found myself Googling really simple terms like breast cancer in family and how to know when to get a preventative mastectomy and my searches always seemed to come up short. There was not one answer to these questions – every case was individualized.
So I started at the first place I knew to go when thinking about a breast exam – my gynecologist. She sent me on a mammogram (which was totally normal – but then again, so was my sister’s!), and then I was left to decide my own next steps.
I went back to Google to find a general surgeon. Maybe, I thought, I can ask a surgeon what he/she would do if they were faced with this situation themselves. He looked at my record: good health, non-smoker, just a woman with lots of breast cancer in her family and he basically could do nothing for me. “See a geneticist,” he said. And I went back to my friend, Google.
And THAT was when the magic happened. I immediately made an appointment at the Breast Hill Center in Jacksonville and after reviewing my family history for hours over several meetings, the genetic counselor wanted to take on my case (for free!) to help me make the best decision. So many people think that this process is ridiculously expensive. It amazed me that I literally never paid one cent.
She conducted the 21 Breast/Ovarian Cancer Panel on me just by taking simple bloodwork. At first, it looked like I had no findings in the bloodwork which had actually made me feel confused. How could this not be genetic if so many family members have had it? After more review, including having my mom fly from NJ to test, my mom and I were declared variant for a gene called NBN.
The kicker for a woman like me who needs answers? There was no answer. NBN was a new, understudied gene and was not something to worry about, like BRCA for example. The genetic counselor’s exact words were: this should probably be fine but we don’t really know what NBN is yet.
All of that research, time, excitement over limiting my chances of getting this horrible disease and we think it should be fine to do nothing.
I did not have the BRCA gene. My sister did not have the BRCA gene. My mom did not have the BRCA gene. And although they didn’t test, I’d have to bet that my grandmothers, great aunt and great uncle did not have the BRCA gene, either. But yet – they all still got breast cancer and I still felt the need to prevent it.
I chose to have a prophylatic, double mastectomy on September 19, 2016 based solely on my extensive family history. Nothing else. Twelve days later, I already feel more laid back about my future.
I urge everyone, female and male, to become familiar with your family histories of diseases like cancer. You may not have an obvious red flag on your health report card like the letters BRCA to tell you that you may have a future problem.
As I recovered on the couch, some dear friends arranged for our house cleaners to come to help keep the house clean (thank you, dear friends!) and our cleaner, Julio, looked at me and said: “Oh, you have the BRCA gene like Angelina Jolie?”
I’d like to think of myself as the Angelina of NBN, whatever that is 😉
If you have had breast cancer, or have had a family member have breast cancer, consider logging on to DNAandU.org to share your genetic story to help others prevent cancer.
LOCAL JACKSONVILLE INFORMATION:
HILL BREAST CENTER: https://www.baptistjax.com/locations/hill-breast-center