Why I Chose To Have A Preventative Double Mastectomy After My BRCA Diagnosis

Courtesy of Sara Altschule

In Bustle's Braving BRCA column, writer Sara Altschule opens up about how she made the difficult decision to have a preventative double mastectomy, and shares the important research that goes along with it.

There are some things in life you never think will happen to you. And, until recently, I would have definitely put having a preventative double mastectomy on my list. But here I am — about to undergo a mastectomy at the age of 31, five months after finding out I’m BRCA 2 positive, meaning I have a higher genetic risk of developing breast and ovarian cancers. I never expected or wanted to be an expert on this type of surgery, but after researching more than I ever thought humanly possible and speaking with doctors and other previvors — someone who is surviving a predisposition to cancer, but who hasn't had the disease — I feel like I know too much now. There are many (and I mean many) types of options to consider when deciding on what to do once you're diagnosed with a BRCA gene mutation.

Researching all of the options and being informed was the only thing that gave me some sort of control in a world where I felt like everything was spiraling. Deciding to have a preventative double mastectomy with reconstruction (breast implants) wasn’t an easy decision, but it was a decision I knew was right for me.

Courtesy of Sara Altschule

Thinking about my medical options, once I was ready to explore them, was pretty intimidating. For me, there were basically two options: surveillance (watchful observation and testing every six to 12 months), or electing to have a mastectomy. Truthfully, I didn't even want to explore either option. But after a lot of tears, anxious thoughts, and discussions with my friends and family, I knew I wouldn’t be able to live a stress-free life under surveillance. I didn't want to have to wait for the day when a doctor tells me, "We found cancer."

Before my BRCA diagnosis, when I didn't know anything about breast reconstruction; I thought it was just a one-size fits all surgery. From where the incisions are placed to the type of implant (or no implant) to the reconstruction method, there’s quite a bit to learn. Once I decided on the double mastectomy, I wanted to put all my energy into finding out as much as I could about this surgery. I was determined to be the gal that came to her doctor’s appointment armed with information and a list of questions. Heck, I even brought an old-fashioned paper notebook.

You can start to feel a bit overwhelmed by the sheer amount of information, but there are some helpful resources out there. I turned to RealSelf, a site with patient reviews, photos, and medical expertise. Googling mastectomy images can be really scary, so I was thankful to be able to use the site to look at actual breast reconstruction photos and know that I was still going to look beautiful afterward. I was also able to ask anonymous and possibly embarrassing questions that would be answered by a physician, easing my anxiety around the procedure and recovery.

Courtesy of Sara Altschule

When it came to choosing my surgical team, I needed to find a breast surgeon who would perform the mastectomy, and also a plastic surgeon who would perform the reconstruction phase of the surgery. First, I went to see a plastic surgeon who came highly recommended. The consult went well, but I didn't have a that's my doctor feeling. At this point, I had nothing to compare it with. So I made another appointment with another surgical team that specializes in breast reconstruction, Dr. Lisa Cassileth and Dr. Heather Richardson, located in Beverly Hills, California. This appointment felt like night and day compared to my previous one. I felt like these surgeons were actually listening to what I wanted. I finally felt heard. Other previvors told me to listen to my gut, and my gut was telling me this was my team.

I am steering this BRCA ship now.

It was important for me to feel like I could trust my doctors on a person-to-person level, because the actual medical part was unnerving. There are different methods when it comes to breast reconstruction. I wanted the direct-to-implant method, also known as the one-step method. (The other type of reconstruction is where the surgeon places a tissue expander into the chest cavity after the mastectomy, where the expander stretches the skin to make room for an implant, which is put in months later.) If you aren't looking to have an implant, there are also ways surgeons can use your own body tissue to reconstruct your breasts, more commonly known as tissue flap procedures. It's important to speak with your doctor, who can help you decide which approach makes the most sense for you.

Courtesy of Sara Altschule

If that's not already confusing enough, now I had to decide if I wanted to keep my nipples (yes, I am), where I wanted my incisions (under my breasts), and if I wanted the implant placed over the muscle or under the muscle (I'm choosing under). Some women choose not to keep their nipples due to their concern with leaving any tissue behind, and some people may not be candidates for a nipple-sparing procedure. And when it comes to over vs. under the muscle, there is a debate about which method achieves better cosmetic results and has less potential complications. (Jury is still out on this one). Having the ability to choose if I want implants under the muscle and deciding to have the direct-to-implant method makes me feel like I have a say in my own future.

Being able to make these decisions gave me a little bit of power back into my life. I can choose how I want to look and feel after this whole ordeal. And trust me, any bit of choice feels good at this point. Realizing that I have options and I can decide what to do with my own body is the most powerful feeling. So arm yourself with information and become the expert of your own destiny. I am steering this BRCA ship now.