It was 2 a.m. on a Sunday night when I looked at my 23andMe results. It said that on top of being 75% Ashkenazi Jewish, I had tested positive for BRCA 2, a kind of gene mutation that increases my likelihood of developing breast and ovarian cancer. My heart sank. I immediately became hot, sweaty, and my pulse started racing. I furiously started to Google what it means if you have the mutation. Bad idea. Reading all of the “what ifs” and the procedures people with a BRCA gene mutation have to go through (MRI, mammogram, preventive double mastectomy, oophorectomy, etc.) was frightening. I’m the girl who’s afraid of getting her blood drawn, and now this is going to be my life? Enter: panic.
Being BRCA positive (also known as the BReast CAncer Susceptibility gene) has been quite a journey, to say the least. Finding out that you have up to an 84% chance of developing breast cancer in your lifetime and approximately a 17% chance of developing ovarian cancer is quite daunting. I can easily talk about what it means to be BRCA positive all day long, but it’s a whole different story when it comes to talking about the emotional roller coaster that comes along with it. It’s hard to find the right words to describe what it feels like when you read, “Your results are positive.” When I saw these words, I was overwhelmed with emotions and all of the information I had to take in. Needless to say, I was freaked the heck out. But I knew I had to keep going. Here's how I moved forward from my diagnosis.
Feel All Of The Feelings
It was almost five months ago when I received my diagnosis, and those first few weeks all seem like a blur now. They were filled with feelings of numbness, shock, depression, anxiety, and everything else in between. I could barely make it to work, and when I did, I felt like my mind was somewhere else — specifically, on that 84% chance of my getting cancer. I learned throughout this process that it’s OK to feel all of the emotions.
There were times that I would cry to my mom and tell her I felt weak, because I couldn’t stop crying. She would remind me that I was strong because I was being vulnerable and embracing my feelings; studies show that avoiding your emotions can actually cause more anxiety in the long run. So, remember to be kind to yourself and allow yourself to feel the feelings whenever they arise, whether you're facing a BRCA diagnosis or at any other time. You aren’t weak. In fact, you are the opposite of weak — you are brave for taking these feelings head on.
Assess Your Current Risks
After you search to the end of Google and back about what it means to have the BRCA mutation, the first thing you’ll want to do is take a deep breath. OK, a lot of deep breaths. Then, you’re going to want to talk to your genetic counselor, and have them walk you through what your risks are today, in five years, in 10 years, and so on. Remember that scary 84% risk of getting breast cancer? Well, that's your lifetime risk. According to a large study published in the Journal of the American Medical Association, the risk for breast cancer for BRCA 1 carriers peaks at age 40 and for BRCA 2 carriers at 50. So before you go into full panic mode, it’s good to keep in mind that depending on your age, this is most likely not your exact risk today. My genetic counselor kept reminding me that my current risk is around 10% today, so I have a 90% chance of not developing cancer right now. That's a more hopeful way to look at this information, right?
Options, Options, Options
After you assess your current risk with your genetic counselor, it’s important to start thinking about what your next steps will be. And while a genetic counselor will help you put everything into perspective and run through your options with you, what you do next (and when you do it) is up to you.
I’m not going to sugarcoat it: thinking about next steps doesn't feel great. You can choose to do surveillance, which, according to Fred Hutchinson Cancer Research Center, means MRIs and/or mammograms every six months, and then, depending on your age and your doctor’s discretion, a twice-yearly pelvic exam, transvaginal ultrasound, and potential blood work. The goal here is to make sure you don’t have cancer, and then if you do, it can be caught early. Alternatively, you can decide to have a prophylactic double mastectomy (where a surgeon removes your breast tissue) with reconstruction. Or, you can decide to have a double mastectomy, and forgo breast reconstruction. Then, when it’s age and situation appropriate, you can choose to have an oophorectomy (where a surgeon removes your ovaries and also sometimes your fallopian tubes).
Personally, I knew right away that looking at those not-so-great options, I wanted to get these ticking time bombs off my chest (and my mind). For me, a bilateral mastectomy with reconstruction would make the most sense; a double mastectomy will reduce the risk of developing breast cancer by 95%. It was both the easiest and the hardest decision of my life. It was my gut reaction, an instinct I had about myself.
However, everyone is different and you should decide what you want to do with your own body — no one else but you gets to make that decision. There isn’t a "right" answer. Some people choose surveillance, then opt for a preventive mastectomy later, and others choose just surveillance. All options are fine, because they are your decisions. It’s going to be hard to make these decisions, and it’s going to take some time to navigate this road. And people will have opinions, but you have to stick to your intuition. When someone would give me unsolicited advice, I'd kindly remind them that it's my personal call and try to educate them on why I am choosing this path. Remember, your body, your choice.
Support from the Squad
When you are going through it all, it’s so important to have people who care about you by your side. This is when your squad needs to assemble. You’re going to need your friends and family for those 1 a.m. calls when you’re having a late night freakout over your upcoming MRI, or moments where you're questioning your decision to move forward with surgery. But just remember, there's a chance that not everyone is going to respond the way you would like them to. For me, I just wanted my support system to listen to my fears and my sadness, as hard as it was for them to hear. When I had friends who would tell me that finding out that I was BRCA positive is a "good thing," because it could potentially save my life, or “you just have to be positive,” I had to remind them of what kind of support I was looking for. I would gently tell them that the most helpful thing they could do was listen and that I was still in the grieving phase of receiving my diagnosis. It’s OK to speak up about what you need during this time. Our friends, families, and partners all have the best of intentions, but we just might need to steer them in the right direction.
It Does Get Better
If you just found out you are in the BRCA club, too, you might be in the thick of it. As someone who was there not too long ago, I can tell you that it does get better. Somehow, after you process, cry a little, and even scream, you start to feel a sense of gratitude. I feel lucky that I am someone who gets to take control of my destiny and hopefully create a long and healthy life for myself. Because sadly, not everyone is so lucky.
These choices are not easy. But, ultimately, they may be lifesaving — and that’s the silver lining I'm holding on to.
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