Don't Forget To Add Reconstruction To My "Surviving Breast Cancer" Bill

Reconstruction after breast cancer is complicated -- at least, it was for me. For several months after my bilateral mastectomy, I really didn't care about having new breasts. Recovering from surgery, getting through chemotherapy and radiation, and surviving were the only things on my mind. I hadn't been wearing breast forms or prostheses, choosing instead to just go flat while wearing all the same tops as I wore before surgery.

After radiation, my skin was burnt to a crisp, so a bra was out of the question. Then, I guess I just got used to not wearing one. I was flat and fabulous and was considering staying that way. But, as my hair began to grow back and I began to feel physically like my old self again, I wasn't as okay with staying flat.

What a lot of people outside the breast cancer community don't understand is that breast reconstruction is part and parcel of the whole breast cancer experience. It is a painful continuation of "treatment." It is not a quick boob job to fix things and it's definitely not a "free boob job," especially after paying premiums, co-pays and deductibles. Oh, and let's not forget the ultimate price of facing a life-threatening illness and losing both breasts entirely.

There is also the issue of the nipples. People are embarrassed to talk about them, but I’m here to tell you that losing them sucks. That's right -- typically with a mastectomy, the nips are removed too (there are instances where nipples may be spared but that was not the case with me), and even if you get reconstructed nipples (which can be done, to be fair) they will never have sensation again. Don't get me wrong -- losing my nipples was a small price to pay in the grand scheme of things, but it’s yet another cost to surviving breast cancer, and one that is most definitely not included with a boob job bill.

"Reconstruction" is a pretty apt description of what takes place. I think "salvage job" works, too. In my case, I had a Latissimus Dorsi flap with bilateral tissue expanders, where muscle and tissue was taken from my back to replace my damaged radiated tissue, and then expanders were placed on both sides. The tissue expanders were painful and uncomfortable. They became hard like coconuts. This was necessary to stretch my skin and accommodate the silicone breast implants I would eventually be getting. My plastic surgeon would stretch the skin with weekly injections of saline into the expanders.

After the first few injections, or "fills" as they are called, I started to feel the soreness. Like when you got your braces tightened, except magnify that by 100, and it would last for days. There is also no comfortable sleeping position with tissue expanders and really no pain medication that helps with the discomfort.

About halfway through the expansion process, the pain became excruciating for me and didn’t let up. It felt as though my skin was being peeled from my body. I no longer had any respite in between fills. I was back to my regular work schedule and getting through the day was agonizing. People would ask how I was doing, but if I started explaining about my expanders, they would lose eye contact and say "Oh, but you’re done with treatment though, right?"

Well I guess so, if walking around with coconuts shoved under my pectoral muscles for several months doesn’t count as part of my "treatment." Why is it so hard to discuss breasts, the loss of breasts and the reconstruction of breasts? They are not mysterious mystical appendages. They simply feed babies and like to be touched during sex.

At first, I was disappointed in myself for wanting reconstruction, like I was acquiescing to society’s notions that a woman’s physical attractiveness depended on having breasts. But eventually, I realized I just wanted a part of my old self back. Just as there was nothing wrong with being fabulously flat, there was nothing wrong with wanting breasts either. After going through this journey, I am happy with my reconstructed breasts. After all is said and done, they are not the measure of my attractiveness, femininity or my happiness -- that's something only I can decide.

What is the total cost of surviving breast cancer for you? Share your experience in the comments below

Photo courtesy of the author.