When Joanna De Fina was 27, she tested positive for the BRCA1 gene mutation related to an increased risk of breast cancer. Three years later, she decided to proactively undergo a double mastectomy, followed by reconstructive surgery — all by the age of 31. Here, she opens up about the emotional aspects of her experience, the unexpected complications, and coming out better on the other side. This interview was told to Rachel Krause and has been edited for length and clarity.
My dad’s mother passed away from breast cancer when she was in her 40s, and her two sisters died in their 30s from breast cancer as well. My dad got tested to see if he was a carrier given his family history, so I did, too. I found out I was BRCA1 positive when I was 27. It took me a couple of years after the diagnosis to start looking into a prophylactic mastectomy and reconstructive surgery; I was busy going to business school and was in a rotational program after that put me in different cities. Once I landed in New York and knew I’d be here for a while, I met with surgeons and decided to do it in July 2014.
My intention for having the mastectomy as young as I did was to proactively take action against the impact BRCA1 could have on my life, which is breast cancer, and live as I had prior to the diagnosis. I never considered not having reconstructive surgery. For me, breasts are a part of who I am, and a part of my womanhood. I didn’t think there needed to be a tradeoff between my health and my appearance.
I had an initial surgery that my plastic surgeon recommended that cut away my breast tissue from the skin so it could form alternative pathways for the blood to flow without the tissue. The major problem with doing breast implants post-mastectomy is that if you don’t have any tissue, then the skin can struggle to survive, whereas with a regular augmentation you still have tissue below the skin.
I’m glad I had that procedure because I ended up having a lot of issues with that after the mastectomy: I had a pretty severe case of necrosis, which means that the skin is struggling to get oxygen and blood and it starts to die. I was treated with hyperbaric oxygen therapy — they put you in a capsule and give you pure oxygen to breathe, and it goes down to a pressure level of being 30 feet below sea level. It’s supposed to help your blood vessels work more efficiently and get blood to areas that need it.
The therapy worked, but not too long after the necrosis cleared up, I got a serious infection related to fluid build-up in my right breast. I don’t remember what the specific infection type was, and I don’t really want to, either — it’s easier to forget some of the more painful details. In the first mastectomy surgery, they remove all of your breast tissue and place in expanders, which the surgeon fills with a little bit of fluid every month to make room for what will ultimately be the long-term breast implants. They had to take one of my expanders out to treat me for the infection, and there were some really dicey moments, to the extent of questioning if we were going to be able to do reconstructive surgery at all. I had some very severe scarring; from a cosmetic-surgery standpoint, my doctor had a lot to do.
Eventually I had my expander replaced and the expansion began working properly, so I was able to get the implants. My first surgery was in July 2014 and the final placement was in February 2015, so it was a very long and disturbing experience. I felt completely helpless at times. I didn’t know how long the process would go, or what I would look like after everything was over. It was like I held my breath and put my head down — you get through it and just hope that things come out on the other side. I was so lucky to be working at a company with incredible benefits. I was able to get weeks off at a time, I worked from home a lot, and I had a female manager who I felt comfortable confiding in about what was going on. She really worked with me, and I had a much easier time in that way than the typical person probably does. The same goes for insurance: My benefits covered more than 80% of the cost of the surgeries, including the reconstruction.
You never want to have to go through something like that, but I learned so much about myself and the people in my life who care for me.
An experience like this takes up all of your time and emotional space. It’s enveloping: There’s the fear of surgery, and then the true physical recovery process. But there’s also an enormous adjustment in your mindset of what you look like and who you are. During that time between having the mastectomy and getting my final implants in, there was a long stretch of just feeling not feminine or sexual in any way. I was single at the time and the idea of dating was not even in the cards, and not just because it would be uncomfortable to not have breasts and start dating someone new. Even after I got the implants and I could objectively tell that they looked good, it didn’t feel like my own body physically. Your body hasn’t adjusted, so you don’t feel comfortable in them. It took me about a year to form that psychological connection.
You never want to have to go through something like that, but I learned so much about myself and the people in my life who care for me. I’m so proud of going through such a challenging experience and feeling like I truly came out as a better person on the other side. Every piece of me was tested during that time: my patience, my pain threshold, my ability to lean on others, and my acceptance of the unknown. I was forced to let go of what was under my control and trust my doctor, my support circle, and my therapist. Somehow, for me, putting all of that trust into other people didn’t make me feel weaker — it was uplifting and empowering. There’s also that peace of mind knowing I’ve mitigated nearly all of my risk of breast cancer. I used to worry about it constantly. I remember waking up from my mastectomy with an indescribable sense of relief.
I honestly feel more confident in my body now than I did before the surgery. I used to be worried about being judged for my shape or size, despite knowing that I take good care of myself. That mentality is just not applicable in this situation. My doctor and his staff were so spectacular and cared so much about my health and happiness. I can’t put into words how that translated into feeling more beautiful than I had before my surgeries, but all of the positivity I was surrounded by during such a hard time, plus the objectively great results we got with my final breasts, gave me a totally different perspective on how I “measure” my physical and psychological beauty.
My situation was extremely unique. To my understanding, and based on what doctors told me, this is about as rough as it gets. What I’ve learned about “complications” is that they’re exactly that: complicated. After a major surgery, your body is doing so many things to heal itself that there isn’t always a specific answer to why things happen or what went “wrong.” No two bodies will ever react exactly the same to trauma of that level.
My cosmetic surgeon is basically a part of my family now. It was such a difficult experience, and he really wasn’t willing for it to end any way other than perfect. I’m actually shocked by how great everything looks and how well it ended up, considering how hairy the whole thing was. I’m technically the same bra size, but the new shape makes them look and feel slightly larger and definitely more perky. I got to keep my nipples, which was very important to me. That’s a luxury some cancer patients don’t get.
About six months after the final surgery, I went back to my surgeon for a check-in, and he had a new nurse who I hadn’t met before. They were taking pictures and everything, and we were talking about how good they looked. The nurse said, “Oh, what did we have done?!” She thought I’d just had an augmentation or a lift. My doctor and I looked at each other and laughed, like, Oh my god, if you have any idea of what we went through to get to these amazing results.