The Things You Don’t Think About

People warned me about some of what I am going to say and some of it might be obvious, but there is much about this situation that I hadn’t processed ahead of time.

  • Sleeping after a mastectomy is extremely challenging. Basically you have to stay on your back while the drains are in place. This is not easy to do, especially for someone who spends 99% of the time sleeping on her side. On the advice of others, I bought a wedge pillow and have been sleeping with that, although by “sleeping” I mean that my nights are a series of short, interrupted and uncomfortable naps that are punctuated by long periods of wakefulness.
  • There is phantom pain. A bilateral mastectomy, at its most basic level, is a double amputation. From the website of my former employer: “Phantom pain is pain that feels like it’s coming from a body part that’s no longer there. Doctors once believed this post-amputation phenomenon was a psychological problem, but experts now recognize that these real sensations originate in the spinal cord and brain.” The sensations vary from pinpricks to electric shocks to tingling to feeling exactly like milk letdown during lactation. They are not comfortable.
  • Outside of the phantom pain, there is total lack of tactile sensation to the chest. I was warned that after surgery, I should never use a heating pad to the chest because I could easily get third degree burns and never know.
  • In theory, you never need to wear a bra again. Well, I mean you CAN, and at this point it really seems odd not to, but you don’t need one for support. Although I am opting for reconstruction, many women also choose not to go that route and are happy with their choice.
  • The reconstruction process is long and multi-step. Although methods vary, a common scenario is to have temporary expanders placed at the time of the mastectomy. The idea is to create a placeholder for a future implant. I saw a sample ahead of time and it looks like a deflated bag of IV fluids.

^^^ This is an image I pulled straight off of Google.

There are tabs that are sewn circumferentially into place to keep the expander from migrating. A lot of the restrictions in arm movements stem from the risk of having them shift. There is a port for filling the expander with saline. An initial fill can be done in the OR at the time of mastectomy or it can start post-operatively. Fills are done at intervals until the desired future size is achieved. As they are being placed, the tissue expanders are also wrapped with Alloderm, which is “Complex acellular heterogenous scaffold and blood vessel architecture; dehydrated and ready to implant.”

That definition does not reveal the fact that Alloderm is really pieces of dried cadaver skin, treated to remove a lot of the cells that would either risk infection or immune response. The idea is that – much like an organ transplant – you do not want the body to reject the expanders; you want to promote their incorporation and the body’s healing (which includes making new blood vessel connections to the surrounding tissues).

I don’t have a complete timeline for this, but once at the desired size, the expanders still remain in place for several months until a second surgery can be done where they are swapped for (hopefully) permanent implants.

From what I’ve read, this process can take up to two years and there are many potential pitfalls: infection, poor healing due to chemotherapy or radiation that require removal of expanders, skin sloughing, fluid collections that require draining, implant rupture, etc. I am far away from the next steps so I am not focusing on potential complications now.

  • How shocking the disfigurement is. I guess I am getting used to it, but as I reported previously, I had a nice sob in the middle of the night the first time I saw my post-operative self in the mirror. It’s a lot to handle.

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