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Why I Had a Bi-Lateral Mastectomy

2020 March 18

In my last post I shared all the info about how I found my breast cancer and how I was diagnosed with Ductal Carcinoma In Situ (DCIS Stage 0, Grade 3, Estrogen+). I also mentioned how my doctor originally thought we’d be treating it with a lumpectomy and radiation. Well, I think it’s pretty common in these situations for things to change quickly.

Immediately following my diagnosis, Stu and I met with my cancer team. It involved a multi-hour appointment to speak with each doctor—the breast surgeon, oncologist, and radiologist—individually. In a nutshell, the surgeon reviewed my scans with us and said the area of DCIS was large enough that a lumpectomy would end up taking out most of my breast tissue and she recommended a mastectomy on that side. She also recommended I get genetic testing to figure out if there was a reason I had this cancer. I don’t have a family history, I’m healthy, and under 40, so that raised a red flag. We decided to wait on a final surgery decision until testing was completed.

Because we decided to do away with the whole breast, radiation wouldn’t be needed—there would be nothing to radiate! So that meeting was cancelled. My oncologist was up next and she said that since my cancer was estrogen positive, she’d probably prescribe tamoxifen for five years. (That convo was then put on hold until after surgery.)

Genetic Testing

This part took a couple weeks (aka forever in cancer diagnosis time) but in a nutshell, I provided my very limited family history and gave blood which was sent off to a genetic testing facility. It was rushed but results still took about 10 days and showed I have a mutation of the TP53 gene. I’m still learning about this diagnosis, but so far I know it makes me 55-85% more likely to get breast cancer again.

Since my reconstructive surgeon had already said he’d have to surgically modify my unaffected side to match the affected side, I figured I might as well just have them both removed. I didn’t want to have to go through any of this again, ever. So it was a pretty easy decision.

Reconstruction Options

In the midst of all of this cancer education, I had to make a decision on what kind of reconstruction I wanted. There’s of course implants, but there’s also something I’d never heard of, but is super common, called a DIEP Flap which basically takes skin and tissue and blood vessels from your stomach to make breasts. My surgeon is an expert in this procedure and I liked that it was permanent and uses natural tissue instead of silicon. (See this video for a better idea of how this worksdon’t worry, its an animation, not real surgery). I chose the DIEP Flap option and proceeded to research and talk to anyone I could find who’s had the surgery. I found tons of stories and support groups to follow, but in the end I decided it wasn’t the right call for me right now. It would involve at least three surgeries— 1) bi-lateral mastectomy to tissue expanders, 2) a 8-10 hour DIEP Flap surgery, 3) then “revisions” like fat grafting—and tons of recovery time. SO much recovery time. I was also worried my back would be an issue since I’d be unable to use my ab muscles for weeks or months due to the hip-to-hip incision. And after having back surgery six years ago, I was not about to mess it up again.

I couldn’t sleep at night with this surgery decision weighing on my mind, worry consumed me. I had nightmares and stress dreams every night. So I met separately with both surgeons again to ask the dozens of questions I’d complied. They patiently answered them all and agreed implants were the best option for me at this time in my life. I know there are risks with implants—believe me I know—but I also have a TON of friends and acquaintances who have no problem with their cosmetic implants and highly recommend them.

My final surgery decision was to have a skin sparing bi-lateral mastectomy with sentinel lymph node biopsy. Tissue expanders would be placed temporarily, which would be gradually filled and then replaced with implants 2-3 months later.

And what do you know, I could sleep again. It was like a giant weight had been lifted.

So then I just waited. Since I had to wait those weeks for genetic testing, by the time we made final surgery decisions and scheduled my surgery date, I ended up having to wait almost two months to get this poison taken out of my body. I cried when they called with the date. It seemed SO far away. But after some thinking, I was grateful for the planning time. I bought supplies, talked to friends, made schedules and lists for my parents who we flew in to help. I got my hair trimmed and hung wall paper and painted my dining room and had acupuncture. We went snow tubing. I made cookies with the kids, took them to museums and parks. I made a friend’s surprise birthday party cake. I went to Barre3 four times a week because I knew it would be months before I could do it after surgery. I went out with friends—coffee, lunch, dinner, drinks, whatever!—and had date nights with Stu, to places like Taylor Shellfish and Canon. I told teachers what was going on. I explained everything to the kids over and over.

Finn and I exploring Gasworks Park, our new favorite Seattle spot

The waiting time was well spent. I felt ready. But still really scared.

But I’m here and cancer free and recovering nicely so clearly the surgery went swimmingly! So next post I’ll share all the details of by bi-lateral mastectomy, including tools/gear I found incredibly helpful for my recovery.

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