I’m 35 years old and let me tell you, what I’m going through right now was not exactly in my 10-year plan when I was 25. Not that I was a sort of person who had a ten-year plan. I was more of a “go with the flow” kind of girl, who didn’t have to think about where she’s going to be in ten years. I was sure that no matter what it was going to be a blast. Boy, I was wrong.
Genetic testing and BRCA
Six and a half years ago my world turned upside down when my sister got diagnosed with breast cancer. And even more so five years later when she lost her battle. At that same time, I’ve decided (for about the tenth time) to get tested for the BRCA gene.
If you don’t know what I’m talking about – BRCA stands for breast cancer and it’s a gene we all have. Two in fact; BRCA1 and BRCA2. But before you start panicking and nervously checking your breasts (actually, that’s good for you so go ahead, I’ll give you a minute), the gene alone doesn’t mean anything. As I said, we all have it, even men.
What we (and by we, I mean people) don’t usually have is a mutation. That means that somewhere along the way, the gene got corrupted and instead of protecting you from breast cancer, it’s (likely) causing it. And that’s the case with me.
Even before deciding to get tested I knew what I was going to do if the results came out positive. I wanted to get ahead of things. I knew If I had BRCA1 or BRCA2, I would choose preventative mastectomy – to have my breasts removed.
Now, this has become a reality and I’ve already had the appointment with a surgeon, who’s going to perform the mastectomy. I have a few more appointments scheduled in the upcoming weeks (months?) to make sure I’m healthy enough for the surgery. I’ve also met with a gynecologic oncologist, who’s going to remove my fallopian tubes. All this to reduce the risk of getting breast and ovarian cancer.
But what is even more shocking to most people (even my surgeon had to take a deep breath and ask me to repeat myself) – I decided not to have a reconstruction after my mastectomy. That means I won’t have any breasts. At all.
Blogging about BRCA
The decision to make all this public was not an easy one. In fact, I changed my mind almost as many times as I did about getting tested. But I wanted to write about it because it’s important that we talk about it. The good, the bad and especially the ugly.
When I was researching my options, I couldn’t find any women my age (or younger) who didn’t opt for reconstruction after a mastectomy. Even worldwide there are only a few who went through this and are willing to talk about it. I keep finding more and more women on Instagram, but many of them don’t have blogs that would have all the information in one place.
I wanted a private space to share my experience and thoughts for future previvors (or survivors) who believe reconstruction is the only option or need someone who understands what they are going through. And also for ordinary, healthy women, who sometimes struggle with their bodies and self-image.
I named it Better Than BRCA because that’s what I am. I’m more than my genes and I’m doing everything I possibly can to prevent getting the disease that killed my sister. We all have the ability to be better than genes in our bodies. After all, genetics is just the starting point.
So here I am, writing this blog trying to make sense of everything and letting you come along with me on this wild journey of preventative measures that will soon leave me
If you want to know more, you are very welcome to stick around.
Have any questions, want to say hi? My inbox is waiting: he***@be************.com