BRCA, party of three…

It was 5 months ago when I decided to share my experience about being BRCA positive and electing to undergo a double mastectomy to prevent cancer. It’s a wretched feeling having to watch a member of your family fight that battle – especially when you know there’s absolutely nothing you can do for them. So after finding out that I, too, was born with such a high risk for cancer, I eventually decided that stopping the big C before it could ever start was most definitely the way to go.

The key word there being eventually.

Though I knew preventative surgery was the right decision at the time, I still seemed to find myself weighing out the pros and cons more often than I’d realized. Hindsight being 20/20, I guess it was only natural to feel that way given the circumstances. Taking a preemptive approach is a difficult pill to swallow when you don’t have cancer. It becomes challenging for outsiders to place and compartmentalize this bizarre situation, leaving them frustrated with our decision, ultimately resulting in their own conclusion of this being “too radical”. The majority of our stories are the same. We don’t seem to fit well with the “pink ribbon brigade” and more often than not, we find ourselves feeling like we can’t talk about our situation. Why would somebody care about something that puts us at risk for cancer? It’s not technically cancer, right? And aren’t there a million other things out there that already put people at risk for cancer? Why should BRCA carriers be a concern for anyone when they’re “just like everyone else”?

The simple answer is that we’re not like everyone else. While everyone else may have a slight risk in getting something like skin cancer from being out in the sun too long, us BRCA babes have an 87% chance of getting breast cancer, all because we’re missing a stupid T somewhere in our DNA. We also have a 44% chance (30 times more likely) of getting ovarian cancer for the exact same reason. Did you know that ovarian cancer is called the silent killer? Try carrying around that bit of information in your back pocket! When a BRCA carrier actually does gets breast cancer, it’s far more aggressive than normal and often turns out to be triple negative, which is much more difficult to treat and the risk of relapse is much higher for the first 3-5 years.

Why is it that when breast cancer is one of the most common types of cancer in the world, the majority of the population still has yet to even hear the term BRCA? Did you know that genetic testing for this particular gene mutation has been available to us for past 18 years? I sure as hell didn’t, until my sister was diagnosed with breast cancer and in turn found out she was BRCA positive. Many of you out there will look at this and brush it off because you don’t have a history of cancer in your family. No one has had breast cancer, or ovarian cancer, or skin cancer or any other kind of health hiccup to make you worry about the big C. But neither did we. My sister and I inherited this gene mutation from our father, which makes me wonder how many other women will receive the same shock we did when this happens to them.

My point of this fact filled session is to make people realize that this isn’t as unlikely as you think. It’s a big deal that this generation is lucky enough to have such testing available to us! Every day people are looking for a cure for cancer and hopefully we’ll find it in our lifetime. But until then, don’t you think it’s pretty amazing to have a heads up in knowing what your risks are? And if you do find out that you’re 30 times more likely of getting cancer than the person standing next to you, wouldn’t you want the option to consider stopping cancer before it started? Why wait for this disease to start attacking your body when you now have a safe and sensible way to stop it from ever happening? Why go through every single day of your life wondering if today is going to be the day when you don’t have to?

I was blessed enough to meet up with two brave women this past weekend who, like me, are BRCA2 positive. All three of us are at different stages in this process: Diana (25) knows she’s a carrier and is gearing up to have her prophylactic mastectomy; Eryn (25) photohad her mastectomy a month ago and is currently in the process of dealing with tissue expanders; and I’ve (28) had my mastectomy and my exchange surgery for implants, but still have one more surgery scheduled for some cosmetic tweaking. It was one of the best highlights of my life to be able to come together as a team and talk about our stories. There wasn’t a feeling of this preemptive approach being so taboo anymore. All we needed was to get it out in the open and there was finally a sense of normalcy once we did. My hope and goal over the next few years is to make this topic of conversation a lot less scary than it is today. It’s our body and we are the ones who get to choose what we want to do with it! It’s not about getting a free “boob job” out of this whole deal it’s about keeping our lives! It’s not having to hear those dreaded words, “You have CANCER.” It’s taking our health into our own hands and being proactive. Not to mention, removing your breast tissue, going through 3-6 months of expanding your skin and having less than perfect boobs when it’s all said and done is hardly what I’d call a boob job.

Climbing back down from my soapbox, I’m happy to say I’ve officially made two new friends through this process. It feels amazing to help these women go through this process like my friend, Holley, did for me. I can’t wait for the two of them to have the exact same opportunity one day. You can find their blogs and read their story under the “Sisterhood of the Traveling Genes”, tab. You can also find my interview link from WFAA Channel 8 in Dallas under “Media”.

Breast wishes –

Amy

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