I found out I had an extremely high chance of developing breast cancer, so I had a preventative double mastectomy at age 25.

• Sydney Weinstock and her sister both tested positive for the BRCA1 gene mutation in December 2020.
• She had a preventative double mastectomy at age 25 to lower her chances of developing breast cancer.

This as-told-to essay is based on a conversation with Sydney Weinstock, a 25-year-old producer from Toronto. It has been edited for length and clarity.

In December of 2020, my younger sister and I both got tested to see if we were positive for the BRCA1 gene mutation, which would increase our chances of developing breast cancer by the age of 70 by anywhere from 56 to 85%, as well as ovarian cancer by the age of 70 by anywhere from 15 to 50%. Our paternal grandmother and great-aunt both passed away from breast cancer before the age of 45, and our aunt is a two-time breast-cancer survivor, so we already knew we were at risk for the gene mutation.

My sister tested positive first, and I was devastated. But when I got tested and received my own positive results weeks later, oddly enough, I felt a sense of relief. At least she wouldn't have to go through this alone; at least we were in this together.

My father lost his mother to breast cancer when he was still a teenager, and I never wanted my future children to have to go through that, so I always knew that I would go ahead with a preventative double mastectomy and reconstruction if I were to test positive for the BRCA1 mutation. Once I had the information I needed, despite my fears, I was ready to get started with the process. It never really felt like a choice.

Still, the healthcare professionals I met with presented me with my options, which included going ahead with the mastectomy now or doing preventative yearly screenings to keep an eye on things. They never pressured me to make one decision over another, and made it clear that I could hold off with the double mastectomy for a while if I wanted to. But I knew that if I didn't go ahead with the surgery, I'd feel the constant fear and dread of waiting to find out if I had cancer at my screenings each year. The very concept of that terrified me, so I knew the right thing to do for me was to have the surgery.

I've had support from my loved ones right from the beginning

Fortunately, my family, friends, and partner were on board from the start. I know they were nervous for the long, challenging recovery ahead of me, but they hid their fears so they could be strong for me. And ultimately, we all agreed this was the best option.

Not long after my diagnosis, I was referred to the same care team that my other family members had used, including a cousin who had the same preventative surgery when she was in her 20s. I had seen her results, and I trusted that I was in good hands. This helped me feel less afraid, like I knew what to expect. I first met with a genetic counselor, and then I met my oncologist in June of 2021. The process was incredibly quick, which I knew wasn't the case for everyone; I was lucky.

During one examination, my oncologist discovered a fatty lump in my breast. And though she said it was likely nothing, she sent me for an ultrasound just to be sure. That process was scary, but I was relieved when the results came back fine and I was cleared to meet with my plastic surgeon for the first time.

My surgeon was amazing, but meeting with him was overwhelming. I had never spent much time in hospitals before, and all of a sudden I had to get undressed in a room with a doctor and his two young male residents. A few different people came in to measure me during the process, and I had to get used to being completely exposed and vulnerable in that way.

About a month after meeting with my surgeon the first time in July, they booked my surgery for February of 2022. I had several more appointments with my surgeon leading up to my procedure to discuss the outcome I wanted, and it was also very important for me to be aware of every possible result. I wanted to know everything, no matter how unpleasant.

I knew this wasn't a risk-free surgery. I could experience necrosis, loss of blood flow, and possibly lose my nipples. I wanted to feel prepared for any possible scenario, no matter how terrifying.

My procedure ended up getting moved up to January at the last minute because all elective surgeries had been canceled as a result of the COVID-19 pandemic, leaving me little time to feel mentally prepared. However, we went ahead with it, and the surgery was successful, though I experienced a leakage in my incision area shortly after.

When they discovered that my incisions had opened up during one of my follow-up appointments, they stitched me back up right then and there, which was a scary experience. This set my recovery period back, and I wasn't able to stretch or move very much for another 10 days, which was discouraging.

My recovery process has been difficult and painful, but community has gotten me through

While I'm still not fully recovered, I've come a long way. One of the things that has gotten me through has been sharing my experience on TikTok and connecting with others who are going through the same thing. So many people who've seen my videos have reached out to tell me I inspired them to get tested or helped them feel empowered about their health. That's important because you have to push and advocate for yourself when it comes to navigating the healthcare system.

I'm glad I went through with the surgery, but some days are still extremely challenging. I have days where I don't feel natural, or like my breasts are truly mine. Sometimes I'm in pain, and I'm frustrated about the physical things I still can't do. There are days where I feel sad that I won't be able to breastfeed my future children.

I am also at risk for ovarian cancer, so once I am done having kids, I may have a hysterectomy. All of it scares me, but it's worth it to know I know I'm giving myself the best chance to be around for as long as possible.

I feel so fortunate to have such a supportive partner, circle of friends, and a family who are there for me no matter what. And I'm so thankful for the BRCA sisterhood that I've discovered along the way. I plan to continue acting as a mentor to others who are going through this — including my younger sister, who will undergo the surgery in a few years' time.

This community showed me I wasn't alone during an extremely difficult period, and I only hope I can continue doing the same for all the other brave women out there who want to take their health, and their futures, into their own hands.