I Advocated for Myself: Nipple-Sparing Double Mastectomy with Implant Reconstruction

I had to fight to get what I needed, but the results exceeded my expectations.

• Procedures: nipple-sparing double mastectomy, implant reconstruction
• Reconstruction immediately postmastectomy: no
• Year of procedures: 2021
• Age: 28 years old
• Ethnicity: white

My breast reconstruction journey started in 2019 when I tested positive for the BRCA1 gene. The gene runs in my family, so it wasn’t a huge surprise. The plan was to get a preventive mastectomy down the line once I’d had a chance to start a family.

In February of 2020, something showed up on an MRI. A biopsy showed it was malignant, and I was scheduled for a double mastectomy in March 2020.

I did well during the surgery and woke up on my 27th birthday in the hospital cancer-free. However, it took 4 to 5 weeks to heal from multiple infections, popped stitches, and seromas, or fluid buildup under the skin.

I tried several types of antibiotics without success. After trying a new one, I was sent to the emergency room with an allergic reaction. I stayed for the weekend, and it was determined that my body was rejecting my tissue expanders. I also turned out to have Methicillin-resistant Staphylococcus aureus, which is an antibiotic-resistant infection.

As a result, I had to get the tissue expanders removed and be flat-chested for 4 months while I waited for my body to fully recover. It was devastating.

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Waiting was the worst part

That 4 months of waiting was worse than going in for the double mastectomy. To backtrack 4 months and add three surgeries on top of everything really sucked. Before diagnosis, we had been trying to have a baby for 4 months, so I was really upset because it was adding even more time.

Cancer was ruining my dream of starting a family. I felt pressured to go back to work, and it interfered with my hobbies: I’m an equestrian, and it messed up my showing season. Cancer doesn’t discriminate.

By August of 2020, I was ready to get my expanders back in. I had no issues and went in for weekly fills to rebuild my breasts. I didn’t have to do many because I didn’t want to go very big.

However, wrinkles had developed on my skin because my breasts didn’t have anything in them for 4 months. To get rid of them, I’d have to go bigger than I wanted to.

The results were better than I’d hoped for

Still, when I woke up from surgery after receiving silicone implants, I was really happy with the results. There are a few creases, but I’m the only one who sees them, and they don’t bother me.

I was very fortunate to have nipple-sparing surgery, which meant a lot to me as a young woman. I wanted the womanhood of my breasts.

They turned gray, which was concerning, but I was told that was normal. They certainly looked like they were under distress for a while.

I was thankful that I got to keep my nipples, but it’s gut-wrenching to know that your boobs have changed. And back then, I didn’t know what they would look like.

Now, I have sensation, and they’re pink again. I didn’t know if they would change during pregnancy because there’s no tissue behind them. They never changed until I gave birth, when they produced a little bit of milk.

The results exceeded my expectations, especially with what I had gone through. I was super excited to see that my breasts looked good and that they’ll continue to look good for the rest of my life.

Why sharing matters to me

I’ve been very vocal because I’m a visual person, and there are really not many young reconstruction cancer pictures out there on the internet.

At 27 years old, my body was different than many of the older women I saw in reconstruction photos. The process can lower your self-confidence because of everything your body goes through.

If someone who has to have a double mastectomy reaches out to me, I show them my pictures.

Advocating for yourself is key

You really do have to advocate for yourself. Getting a second opinion and following your gut are the biggest things.

Keep fighting for insurance. It’s wild that you have to press so hard for what you need, but you do.

There are rare cases when doctors can’t do nipple-sparing surgery, but in my experience, it seems that some doctors just don’t want to. If you want to keep your nipples, go get a second opinion. You have to really push with doctors and advocate for yourself.

It’s OK for it to be hard

During the thick of it, I felt frustrated by people telling me to look at the light at the end of the tunnel. It made me so mad because I just wanted to be weak and allow myself to be sad for a second. Everybody told me, “You’re so strong.”

It’s OK to be sad and upset about your situation, but it’s still important to know that there is always light.