Becoming a Role Model: Double Mastectomy with Tissue Expanders to Flat Closure

After complications with tissue expanders, I decided to go flat. I didn’t want my daughter to think breasts are so important that I’d risk my health for them.

• Procedure: double mastectomy, tissue expanders, flat closure
• Reconstruction immediately postmastectomy: yes, but there were complications
• Year of procedures: 2011
• Age: 44 years old
• Race or ethnicity: white

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From diagnosis to lymph node removal

When I was 41, my husband noticed a lump in my breast, and it turned out to be breast cancer. I had three estrogen-positive tumors in one breast, and we were scared.

A general surgeon (not a breast cancer specialist) removed some lymph nodes under my left arm to dissect them, and I thought nothing of it.

At the time, I didn’t know how important lymph nodes are. I’ve had lymphedema in my chest and back ever since.

My reconstruction decision

After my diagnosis, I connected with a medical oncologist, breast surgical oncologist, and plastic surgeon. I decided to have a double mastectomy and breast reconstruction with saline implants.

I decided against getting a TRAM flap reconstruction because I bodybuild. I didn’t want them to cut into my abdominal wall.

I thought the silver lining of my diagnosis would be getting fabulous new breasts for free! My 34DD breasts had seen better days after three children. I knew it would be a long, painful process, but I looked forward to the outcome.

Immediately after my mastectomy, the plastic surgeon placed tissue expanders in my chest. The plan was for the doctor to gradually fill them with saline over a few months until they reached the desired size.

There were complications

Two months later, I was drawing with my youngest son, and I felt something sticky through my shirt. My chest had opened up, and lymphatic drainage fluid was coming out of a hole in my breast.

I spent 7 days in the hospital, but there wasn’t an infection, and it wasn’t saline from the tissue expander coming out — I just had a lot of lymphatic fluid collecting in the area.

The doctors sewed me up and placed drains to remove the fluid. We continued to add saline to my expanders according to plan until it happened again a few weeks later. I watched my reconstructed left breast fall apart.

Losing my breast for a second time was harder than the first. I felt sad, angry, and a bit silly for crying over something as superficial as breasts when I could still have cancer.

I told my doctor right then and there to take out the left expander, and that’s what happened.

I had a drain in my side for 24 days. I’ve had so many drains on the left side of my body that it looks like a pincushion.

Choosing to go flat

Later, my surgeon suggested trying again with DIEP-flap reconstruction for my left breast, using fat from other areas of my body, but I said no. I thought it was silly to try again. My reconstruction failed horribly twice, so I thought, “Why would reconstruction work this time?”

I didn’t want to risk putting my body through hell again. I didn’t want to be a bad example for my then 13-year-old daughter. I didn’t want her to think that breasts are so important that Mommy has to be in the hospital for weeks at a time, risking her health for them.

So I decided to have the other implant removed. In between surgeries, I wore one prosthetic for my left breast until I could have the right expander removed. Now I still have extra skin from the temporary “foob.”

I used to wear prosthetics for both breasts, but they really hurt because my skin was raw and sensitive with scar tissue. Now I wear compression binders and compression shirts. I don’t feel as self-conscious about being flat as I used to. No one else notices except me.

What I wish I’d known

It’s vital to be your own advocate for your health.

It’s important to understand how you can reduce your risk for lymphedema after a mastectomy. Now I have constant chronic pain in my chest and back, but lymphedema massage therapy helps.

I think that if that general surgeon hadn’t removed those lymph nodes, my surgery would have been successful.

I’ve been talking to a lot of women with breast cancer, trying to help them, which has been great therapy for me. I feel like I’m supposed to be a role model to other women and feel beautiful without breasts.

For now, I am cancer-free, and that should be all that matters. Maybe I will try on the prosthetics tomorrow and see how they feel, but I may just keep them in my drawer for a rainy day.