The one about having a prophylactic mastectomy

10 YEARS AGO

“I participated in a BRCA gene study at a hospital when I was 22. No one in my family had any history of breast or ovarian cancer, but a year later I tested positive for BRCA. It was shocking because never in a million years did I think I would test positive - I just wanted to do something for research. I was told that I needed to have my breasts and ovaries removed. At that time, I was in a new relationship and I was encouraged to have kids quickly. Suddenly, family planning and the future were on my mind. I started rigorous screening - MRIs and mammograms every year. In between being diagnosed and now, my husband and I were fortunate to have three children. But during that time, I couldn’t have any screening, which was nerve wracking. It was never a question for me whether or not to get surgery. The second I found out about the BRCA gene, I knew I was going to have my breasts and ovaries removed. I felt like a ticking time bomb every year that I had my breasts and ovaries.  If I could do something to potentially save my life, why wouldn't I? I got them removed when I was done having children and no longer needed to breastfeed.

SEPTEMBER 2020

I always talked about having my breasts and ovaries removed, but I did it almost without emotion. It was like a script. It wasn't that I didn't have feelings about it, it just seemed far in the future, then all of a sudden, the time came. I was 35 and I had a lot of anxiety about the idea of not having more children. I've been in therapy on and off since being diagnosed, and it’s been a huge support for me. During the fall of 2020, I had a lot to work through. I think it was the anxiety of not knowing the next steps. I found myself in chat groups talking about things like, over the muscle and under the muscle, expanders, one step process and all this jargon that I didn’t understand. I began to feel better when I started speaking to as many women as I could who had gone through it. I was on the phone almost every night speaking to people from all over the world. I found them on a Prophylactic Mastectomy Facebook group. I felt my anxiety subside because I was actually starting to do something about it. It was also kind of fun. My husband and I would look at breasts online for hours. We’d ask each other, ‘what do you think of these boobs?’ My breasts before the surgery were pretty deflated. I was an empty B. They were just empty sacks after three children pumped the life out of them. I chose a surgeon known as ‘The Boob Guy.’”

JANUARY 2021

“I had a prophylactic double mastectomy at the end of January. They removed all my breast tissue and the biopsy was fine. I was able to keep my nipples, which was hopeful because I didn’t know if I’d be able to. If your nipples don’t have enough space from the bottom of the breast, sometimes it doesn't work, and sometimes nipples die in the process. They kept me feeling almost sexy and feminine. The surgery happened in the middle of the pandemic. My mom came from out of town and thank God for her. It was a saving grace to have that support. To live in a city with no family, especially at a time when you’re going through surgery, is really scary. My mom stayed at a friend's apartment. I recovered there away from the children for five nights so they didn't have to see me. I was nervous about having the drains. With a mastectomy, there are two ports coming out of the armpit area with tubes and bulbs that fill with puss and blood. They have to be emptied out a couple times a day, which kind of freaked me out. My mom rose to the occasion and did the drains and all my cleaning. She wiped my bum and did everything for me. The first two days of recovery were hell. I had a bedpan to pee. By day five, I was doing most things. I wasn’t supposed to lift anything for six weeks and my youngest was 12 months old at the time, so that was a challenge, but I had a really smooth recovery from the surgery. It was exactly what we were hoping for. I got my drains removed after a week - they literally just pull them out. I couldn't believe it, it felt barbaric. But it wasn’t painful because I don’t have any feeling - touch or temperature -  on my breasts any more.

Every two weeks, I went for fills where saline was put into the expanders, which are almost like ziplock bags. After the surgery, I imagined waking up and being flat, but I wasn’t. I was like a big A coming out of surgery, which helped my outlook. I had this big fear of looking in the mirror and not feeling feminine. Not to say that breasts make you feminine, but it is part of my femininity and I was worried I would look in the mirror and see a flat chest with a scar. My scar is underneath my breast and all these things help with my acceptance. 

There were moments where I’d cry and ask ‘is this disgusting?’ There was puss coming out of me and my drains. But I’m lucky because my husband has never made me feel bad. He would hold the bedpan while I would pee all over the bed and myself. We were lucky that we made it work."

APRIL 2021

“It was a much harder decision to think about removing my ovaries than my breasts. I'm an emotional person and I was worried about what it would be like managing my hormones with no ovaries. I met with two doctors and we agreed with removing my tubes, with a plan to remove my ovaries in the future. If I had a wish around this BRCA journey, it would be for someone to have guided me more on ovarian surgery. There are so many prophylactic mastectomy groups, but I found myself lost on the ovary side.

LATER THAT MONTH

I just had my surgery four days ago. I am bruised and everything looks bumpy, but I am hopeful that it will settle. This is a life saving surgery. I have three children, I have a husband, I have a family and I want to be there for them. There are so many people around me who have cancer - I know someone who is dying of it right now.  I'm so fortunate to be able to prevent something from happening to me and to be here for my family. I feel so strongly about people getting tested and protecting themselves because not everyone has that luxury and I feel really lucky to have that.”