I’m Having A Double Mastectomy To Lower My Genetic Risk Of Breast Cancer (& Yes, It’s Scary)

Sara Altschule at the hospital examination
Courtesy of Sara Altschule

In Bustle's Braving BRCA column, writer Sara Altschule shares what's it's really like to prep for a preventative double mastectomy.

Before being diagnosed with a BRCA gene mutation, I thought I knew what anxiety felt like. But it’s a whole new ballgame when you know you have up to an 84 percent chance of developing breast cancer. Then, when you are preparing to undergo a preventative mastectomy to decrease your risk of developing breast cancer by at least 95 percent, well, for me, this was my anxiety peak.

Coming to terms with the fact that I am saying “goodbye” to my breasts in a few short weeks has been an arduous journey. From diagnosis to assessing my options, this experience has been an uphill battle that I can't wait to conquer. These past few months, I’ve been preparing for the last part of this fight — my double mastectomy with reconstructive surgery.

I wholeheartedly believe it's important for everyone facing this choice to decide which treatment option is best for them. Personally, I couldn't deal with the anxiety of knowing my high risk. After giving myself about five or six breast self-exams a day, I knew it was time to look into getting a preventative double mastectomy.

Courtesy of Sara Altschule

And just as I was when I started my first job, or when I pack for a big trip, I am prepared. Okay, like a little too prepared. Heck, getting ready for this surgery is like my second full-time job.

For this type of surgery (direct-to-implant reconstruction), my doctor told me recovery can last around six weeks. In the beginning, I won’t have a lot of range of motion with my arms. Some women I’ve spoken with like to call this "t-rex arms." So while I’ll be t-rexing it up, I will want to make sure my environment is set up nicely for me. I don't want to store anything up too high (though I'm already short, so I'm used to that being an issue). I won’t be able to lift my arms to put my clothes on, so button-up tops it is. For my recovery, I am making it a point to still feel cute, so I bought the cutest pajamas/loungewear I could find. (Shoutout to Target for having some fly PJs.) And you better believe I’m going to make my way to a DryBar for a much-needed hair washing (since it'll be hard to shower with my drains in).

Courtesy of Sara Altschule

From talking to other previvors, I've heard that sleeping can be the most frustrating part of recovery. Because you can’t sleep on your stomach and/or sides for a while, I’ll need to get used to sleeping on my back (ugh). I’ve read that pillows can help tremendously, so I bought myself an amazing U-shaped pillow that's made for pregnant women. (Yes, I've tested it out, and yes, it's comfy AF.) I am also renting a hospital bed because I’ll need to sleep at a 45-degree angle for the first two weeks. Though it may not be a Four Seasons bed, I like to think I’ll be fancy, having an electric remote and all.

Even after I bought all these much-needed items, I knew I still needed to prepare myself mentally for this surgery and recovery. It was probably after the two mini-meltdowns I had where I just couldn't get a hold of my anxiety when I knew I needed to make some changes. For me, that meant working on letting go of the things I can’t control and having faith in my doctors and this process. When my BRCA brain is going wild and I can feel my heart racing faster and faster, I stop and say to myself, “let go and have faith.” This letting go part has been one of the toughest hurdles to get over, but slowly and steadily, I’m getting better at it.

Courtesy of Sara Altschule

I also knew I needed to have realistic expectations going into recovery. For starters, having a preventative double mastectomy with reconstruction is not a boob job. It's a medical procedure designed to minimize your genetic risk of cancer. Perfection is not what I’m trying to achieve here, and I need to remember that when I look down at my breasts week one, week two and even week six. With breast reconstruction, there may be rippling, complications, and further revisions down the road. Something most women don’t know (I didn’t, before all of this) is that you often lose most sensation in your breasts after surgery. It was important for me to grasp this, and to prepare myself for my new normal. Having the right expectations will hopefully allow me to process these changes a little more easily.

How could I be strong and brave if I was terrified? But then I started to realize that just because I was scared it didn’t take away from my power. It made me human.

Something that also helps is having a solid support system going into an operation like this. You’re going to (literally) need to lean on your friends and your family. I’m extremely lucky that my parents have been there to pick me up when I am very down. And my friends are the ones cheering me along and reminding me of how brave I am, even when I don’t feel it. In fact, my bestie is throwing me a boob-voyage party the weekend before my surgery.

The biggest lesson for me during this waiting period has been the concept of being strong and scared at the same time. Before my diagnosis, I didn’t fully grasp that I could be both scared and strong together. I felt that my fear made me weak. How could I be strong and brave if I was terrified? But then I started to realize that just because I was scared it didn’t take away from my power. It made me human. And I am strong for admitting my vulnerabilities and I am strong for pushing past my fear. So today, I am scared and I am strong — and I am ready to face my fears.