5 things I learned after my double mastectomy

As a former nurse in MD Anderson’s Post-Anesthesia Care Unit (PACU), I felt pretty familiar with breast cancer surgery. So, I thought I knew what to expect when I scheduled my own mastectomy last August.

But, as it turns out, going through the process as a patient myself held some surprises. Here are five things I didn’t anticipate and how I handled them.

1. Embrace your range of motion exercises

When I was a PACU nurse, I mostly cared for patients who were just waking up from breast surgery, so they weren’t as active as they would be later on. That’s why I don’t think I fully understood the limited range of motion that comes with having both breasts removed.

The first time I tried to lift my arms after my surgery, the discomfort in my muscles stopped me cold. I’d been given stretching exercises to slowly work my way back to full range of motion. But until I got there, I needed help to take a shower, because I couldn’t reach around to wash my back.

That was a very humbling experience. I’d given many baths as a bedside nurse, but until then, I’d never been on the other side of the sponge. And though I have a much better range of motion today, there’s lingering tightness in the muscles under my arms. So, I still do my stretching exercises daily. It really helps.

2. Ask caregivers to go slowly when stripping drains

I’ve taken care of many patients with drains, where I had to “strip” — or empty— their drains. I didn’t realize that patients could actually feel (and hear!) the fluid being removed — and that it sometimes hurt. After my surgery, I went home with four drains, two on either side. And during the stripping process, I experienced a sharp pain each time the fluid was drained. Over time, I learned that going more slowly reduced that pain.

Fortunately, removing the drains went much better than I expected. It was quick and easy, and I didn’t feel any pain. Draining the seroma — or collection of fluid between the skin and the expander that accumulated in my left breast after the drains were removed — was also easy. I had to have it done three times, but it wasn’t painful and it only took a few minutes.

3. Be flexible about getting comfortable

After my double mastectomy, the plastic surgery team implanted tissue expanders to help stretch my remaining skin (in preparation for permanent implants, which would be installed later). I was able to see the expanders during my pre-surgery consultation, but I didn’t realize they’d be so uncomfortable.

Tissue expanders aren’t as soft as permanent implants, so I sometimes felt restricted in my movements, due to their firmness. Finding a good position to sleep in was the biggest challenge. The expanders sometimes felt like bricks on my chest, and when turning from side to side, I couldn’t reposition them the way I would my natural breasts.

I had to be creative and use additional pillows to get comfortable enough to fall asleep. And when I returned to work, I also had to place a pillow between my expanders and the seatbelt to be comfortable while driving.

4. Managing breast discomfort with oils, massage

About two months after my mastectomy, my tissue expanders were inflated to their final size before placement of the permanent implants. A few weeks later, I noticed skin discoloration on my left breast that was very itchy. I tried several different methods to relieve the itching, such as antihistamine cream and oatmeal paste. Nothing really worked. Eventually, the itching subsided, but then the left breast became even more discolored. It was also very shiny and painful to the touch.

The surgeon said I had “capsular contracture,” which is a tightening of the scar tissue. He was able to remove the majority of it before placing my permanent implants, but there’s always a chance of recurrence. I massage my skin twice a day with coconut/shea oil to try to prevent that. I would’ve done it before I developed the condition, too, if I’d known it might help.

5. Beware of hugs after breast surgery

I didn’t know receiving hugs after breast surgery would never be the same. Naturally, everyone wanted to hug me when I returned to work. And people were so excited that they wanted to squeeze me tight. But I had to put up a cautionary hand and say, “Please don’t squeeze my fake boobs.”

Even now that I have permanent implants, my chest is still slightly sensitive, so I have to give what I call the “church lady hug,” which is a hug with a lot of space between us. Most people understand and don’t take it personally, but even if someone does, I don’t worry about it. Being gentle with others is a natural thing to do, and I’m not afraid to ask for it.

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