Phantom Pains: Life after a Double Mastectomy

My plastic surgeon told me that it would be like this.

After I was diagnosed with a BRCA2 mutation,((As I’ve written about previously, in the summer of 2014, I was diagnosed with a BRCA2 mutation. Individuals with BRCA2 mutations have are five more times likely to develop breast cancer than the average woman.)) I spent all of my free time researching prophylactic mastectomies, trying to figure out how I would look afterwards and how much time I would need to take off from work. I became more and more well versed on the physical impact that the surgery would have, but I failed to consider the impact that it would have on my psyche.

In the months leading up to my mastectomy, my plastic surgeon told me to give myself time to grieve. “You’re losing a body part and it’s important to give yourself time and space to process the loss,” she said. She was right in one sense. I don’t grieve the loss of my breasts. But I often find myself mourning the loss of the person I was before.

There are few studies on the psychological impact of undergoing risk-prevention surgery. One of the most comprehensive studies followed ninety-eight women who underwent bilateral prophylactic mastectomies and evaluated body image, sexuality, emotional reactions and quality of life one year after the procedure.((Brandberg, Y, et. al. “Psychological Reactions, Quality of Life, and Body Image After Bilateral Prophylactic Mastectomy in Women At High Risk for Breast Cancer: A Prospective 1-Year Follow-Up Study.” Journal of Clinical Oncology, 2008)) The study found no negative effects on anxiety, depression, or quality of life but almost 48% of the study participants reported feeling less sexually attractive and a similar rate reported feeling self-conscious about their body image. Follow up studies have reported similar reactions. I was different.  I quickly adjusted to my new body with no issues, but still I had trouble coping with the weight of my choice.

After Angelina Jolie published her now famous op/ed in the New York Times about her decision to undergo a prophylactic mastectomy, the “Jolie effect” caused a huge spike in the number of women seeking BRCA testing. Additionally, the use of prophylactic mastectomies to address BRCA1 and BRCA2 mutations doubled between 1998 and 2005. Despite the increasing popularity and effectiveness of this treatment method, cutting off healthy body parts to reduce your risk of cancer still feels like a very radical act for many women. As my genetic counselor recently explained to me, the human mind isn’t wired to think about death until you’re well into your 60s. Thinking about mortality at such an early age is a shock to the system. It makes you realize how short life can be. When you’re young and you haven’t achieved certain milestones in your career or personal life, it’s very easy to tell yourself to be patient and that those things will come someday. After the surgery I started to feel like life was rapidly passing me by and that the window of opportunity on the things I wanted was closing.

Almost every single person who saw me in the first month after the surgery marveled at how great I looked. I was back at work three works later. To all the world outside, I was making a full and swift recovery. On the inside, however, I was slowly unraveling. I felt an intense pressure to make sure that my life was worthy of the sacrifices that were made, and began questioning all of my major life choices.

The previous year I had finally escaped from a big law firm job that wasn’t a good fit and made the decision to go to a smaller firm, even though it lacked my dream practice, advertising litigation. At the time I had rationalized the decision because it would allow me to become a better lawyer and get out of a stressful situation. After the surgery I found myself wondering if I had given up on my dreams way too soon. What was the point of having surgery to live a long healthy life if I wasn’t living the life that I truly wanted to be living? And how was I supposed to get the life that I wanted?

Those same questions started to spill over into all the other areas of my life. I was torn between wanting to go on as many online dates as possible (so I could finally achieve what feels like the unachievable—marriage) and hiding in my apartment so I would never have to explain to a guy why there was a long scar across each breast. During one particular drama, I walked out of a terrible Tinder meet up after explaining to the guy that “I didn’t have all this silicone stuffed in my chest so I could sit here and waste my time on a terrible date.” When I would try to turn off all the thoughts spinning in my head, almost like clockwork, the muscle under the implant would often spasm, a reminder that I couldn’t escape my decision.

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Everything was also compounded by the fact that I felt like I had no one who understood what I was going through. The first two weeks after the surgery were filled with visitors, flowers and cards and a party that found thirty of my closest friends packed into my 1 bedroom apartment. But eventually life went on for everyone else and they returned to their normal routines, while I was trying to coming to terms with what I had done.

Most of those friends haven’t been forced to confront their mortality and life choices in the same way and there were some days when it felt like I was talking to them in a different language.  A few weeks after the surgery, I was out with a group of friends at a bar and when the waiter asked what we were celebrating I (drunkenly) explained that we were celebrating life. After the waiter walked away one of my friends leaned over and told me to chill. The response was unintentionally biting. “I know the surgery was a big deal but it’s not like you got hit by a bus or anything. You were never at risk of actually dying and as a bonus your new breasts look great.”

I laughed in response but I brooded over the comment for the rest of the night.. When you go through a traumatic experience, friends will often encourage you to focus on the positives as a way of being supportive. It’s how we’re wired. But at the same time I wanted the people I was closest to acknowledge how difficult the decision was. I wanted them to understand what I had just gone through.

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I’ve had the desire to write this since early January but it took me until early March to actually open up my laptop and start typing. When I finally started writing, I realized my writers’ block was the result of my hope that I would be able to write this article and give it a definitive ending—to be able to say that I had resolved all of these complex feelings and was now living happily and at peace.

This ending is my realization that there may be no ending, that I actually don’t know when – or if – that “happy ending” will come to pass.  I’ve adjusted to the fact that the process might take months because I’m navigating unknown territory on my own. There are not support groups for this type of thing. I might always have unresolved emotions.  The decision of any woman to remove her breasts is driven by so many individual factors that there will never be a “one size fits all” way of coping, so I’m figuring it out as I go. But at the very least I’ve got a long healthy future ahead of me to do it.