Getting diagnosed with a BRCA genetic mutation is difficult news to process. Even if you don’t have breast cancer, you’re at a significantly higher risk of getting it before age 80, so what do you do? Hope you’re part of the minority that won’t? Jump into a mastectomy and reconstruction? There are so many decisions to make. The best ones are those you make for yourself, once you know all your options.
To understand what it’s like to navigate the diagnosis and the decisions, we talked with RealSelf community member Sara Altschule. Sara made the decision to have a double mastectomy and breast reconstruction after finding out she’d tested positive for BRCA2 gene mutation. Here’s what she has to say about anxiety, research, and the sense of power she regained in making the right decision for herself.
How are you feeling leading up to your surgery?
With my surgery getting closer, I thought I would be feeling a lot more anxious. I’ve had a couple of mini meltdowns (okay, maybe more than a couple) since I scheduled my surgery three months ago. I feel like I’m tackling my anxiety a little bit better, which is surprising. I don’t know how I will be the day before, but right now I am appreciative of each moment I feel a sense of happiness. I am finally mentally and physically prepared for this surgery and have learned to let go of the things I can’t control. Which was easier said than done.
How did you first hear of RealSelf?
After I found out I was BRCA2 positive, I Googled, Googled, and Googled. I found myself overwhelmed with information, finding one scary article after the next. When I wanted to know what women looked like after their double mastectomies with reconstructive surgery, luckily I found RealSelf. I finally felt like a weight had lifted off my shoulders. Here I could see real women who still looked like themselves afterward, and more importantly, still looked beautiful. Every time I became anxious, I would look through these before and after photos to calm myself down.
How has RealSelf helped you during your journey?
RealSelf basically shaped my action plan after finding out I was BRCA2 positive. I was able to find my plastic surgeon through RealSelf. I found her beautiful before and after photos and lovely reviews, and I knew I had to meet her. Not to mention, I was able to ask anonymous questions that helped ease some anxiety prior to my consultation. I could read other accounts of what the surgery was like and how to best prepare myself. Truly, the more research I could do, the better. I’m so thankful for RealSelf.
How did you know you’d found the right doctor?
I had one consultation with a plastic surgeon who came highly recommended. It was a great consultation, but I didn’t have that gut feeling that this was “my doctor.” I thought, maybe I am just not going to find that feeling. But after I met with Dr. Cassileth and Dr. Richardson, I knew right away I wanted to book my surgery with them. I felt so comfortable with them and confident in their work. I knew my life would be safe in their hands. They spent as much time as I needed with them, didn’t make me feel crazy for asking so many questions, and they actually listened to what I wanted.
What different reconstruction options did you consider?
It was a little overwhelming to decide which option would be best for me. I was looking into whether or not I would be a candidate for the direct-to-implant method (sometimes known as the one-step method). With this method, the implant is placed by the plastic surgeon at the time of the mastectomy. I was also curious about the tissue expander procedure, which is more commonly performed. In this scenario, after the mastectomy, the surgeon places a tissue expander to stretch the skin. Every few weeks, the tissue expander is filled. Once it’s at the desired breast size, the surgeon replaces the expander with a breast implant.
What did you end up going with and why?
Every woman is different, and I believe it’s important for each woman to decide what’s best for her. Since I am a candidate for the direct-to-implant method, it seems like the best option for me. I am going to be able to wake up with my reconstructed breasts right after my mastectomy. And for me, that is something I desired. Also, I am not choosing to increase my breast size dramatically, so there isn’t a necessity to stretch my skin with tissue expanders.
What would you want other women to know, as they’re figuring out their reconstruction path?
The most significant thing you can do for yourself during this journey is to be the captain of your own ship. This is your body and your decision. Arm yourself with research and knowledge, ask a lot of questions, and find the doctor and procedure that’s right for you. Knowing that you have options and choices will give you more of a sense of control.
During October, RealSelf is talking about breast reconstruction—from explaining all the different options to highlighting inspiring stories from our community. To learn more, and see the rest of Sara’s journey, go to Reconstruct Your Narrative.