I guess I should start this blog off with some information about who I am and how I got to this point. My name is Erin. I have two lovely little girls, a husband of six years, and a miniature zoo of pets. I am a cake decorator, a crocheter, an amateur chef, and a college student, studying physical therapy. I have a mom and a dad and some siblings and I grew up like everyone does, with one exception. When I was 15 my mom was diagnosed with breast cancer at the age of 35. BRCA testing was mentioned at that point but nobody pushed the issue and it was never done. Fast forward ten years, and my mom was diagnosed with breast cancer again, a month after my oldest daughter was born. This time she pushed the doctors into doing the full BRCA test. Months later, her expected positive result came in and she proceeded to have an oopherectomy (removal of ovaries). She'd already had mastectomies on each breast. Her BRCA test now meant that I had a 50% chance of being BRCA+ as well. A lot of people freak out when they're faced with whether or not they should find out. For me, it was easy. I had to know.
As expected, I am BRCA1+. I knew I would be, I just had a gut feeling. I was sort of prepared for it, in the sense that I had a plan. What I didn't know was how I would feel about it, or how other people would react to it. That was the hardest part I think. I wish I could be one of those people who says that I'm lucky to have lots of support but I'm not. The only person throughout that truly supports me and stands behind my decisions is my mom, and I think that's because she understands. Mostly I've been met with opposition though. I've heard that I'm borrowing trouble by even having the test done. I've heard that genetic testing is weird and wrong and that I should stop worrying about such things. I've been told that "everyone's going to die of something, and you can't run around getting tested for everything". And of course, I have heard from numerous people that considering mutilating my body is absurd and way too drastic and I'm overreacting.
Here are the facts: I have a deleterious mutation of the BRCA 1 gene. It is an inherited trait, so I had a 50% chance of having it, and so do my siblings. Because I tested positive, my daughters now have a 50% chance of having it. While I can't make them get the test done when they're 18, I can educate them, and I plan to. I'll use every opportunity I have to educate them on their genetics and how they can save their own lives. My particular BRCA 1 mutation gives me an 87% chance of developing breast cancer in my lifetime. Yes, that's almost 90%, which in my mind is almost 100%, so basically, I am destined to get breast cancer. I also have a 40% risk of developing ovarian cancer. Since ovarian cancer isn't present in my family, I have a tendency to not worry about this one as much, although I should. Ovarian cancer has been termed the "silent killer" because it is very hard to detect and has almost no symptoms until the late stages. Scary stuff. To put it in perspective, the average woman has a 1% chance of developing ovarian cancer and a 12% chance of developing breast cancer. My chances are dramatically higher, obviously. I don't feel like I'm crazy for being concerned about this, and I'm not sure why other people think I am....?
So that's my background. I'll have more posts upcoming about my experiences with my previous and current doctors, tests, and the choices I'm facing. There's just too much information for one post. But I hope this blog can at least shed light on this topic for some people, and help some other previvors in their journey.
You can read more about the BRCA mutations here.
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