Why I'm Not Getting Reconstruction

Here's another question I've been asked since sharing my news. Why have I chosen no reconstruction?

Again, this is a super personal decision. For some women, it's not even a question, getting reconstruction is just a part of the process. Every person has to do what is best for them, no one else. There's no place for judgment when talking about body image, especially in the context of cancer treatment.

Along with being thorough and risk averse, I also value practicality and efficiency. I don't think it's about looking for the "easy" path, but the path of least inconveniences (which, generally speaking, I think actually tends to require more advanced planning).

Getting reconstruction typically means having a longer recovery period after surgery, and usually involves multiple surgeries over a long period of time. Over the years, complications are possible, and sometimes implants need to be replaced. This whole experience has been so disruptive and unpleasant that I just want it to be done. I don't want to have to think about multiple surgeries moving forward, or increasing the likelihood of complications of any kind.

Since it's still possible for breast cancer to recur even after a double mastectomy, my NP says I will have regular clinical exams to feel for palpable lumps under the skin. The same method is used even with reconstruction, and I just feel better knowing there is nothing obstructing the detection of new lumps. Some women who get reconstruction might still be recommended for routine breast imaging, depending on their risk factors. To me, that just translates as an added on-going inconvenience.

Beyond wanting to minimize procedures and complications, and wanting clear access to detect possible recurrence, of course there's the self-image factor. When I think about it, I don't feel like my breasts are a significant part of my self-identity. Of course, I won't know how I really feel until after the surgery...

I am apprehensive mostly about two things. First, that I might end up with "dog ears", little flaps of skin or fat that hang under your armpits and look like little dog ears. (Some women call them "side boobs"!) My breast surgeon assures me that if I do develop them, he or a plastic surgeon could do revision surgery to remove them. It would be unfortunate to have to have another procedure, but at least I'm prepared for the possibility.

Second, without breasts "rounding out" my body shape, my belly fat will be more noticeable. (Some women refer to having a "Buddha belly"!) I've mostly not been self-conscious about my weight gain over the years, I think because it's not super noticeable with my body type. But it will definitely be more noticeable without breasts. I am thinking I will want to make more of an effort to eat well and exercise to hopefully reduce that belly fat a bit. And as much as I am not a fan of shopping, I will need to find new clothes that fit and are flattering.

There is the option of wearing prosthetics, and I haven't ruled it out. I'm honestly not thinking about it too much just yet, as I want to see how I feel just being flat. Apparently there are all kinds of prosthetics available, so it will require more research if I go in that direction.

Finally, one related thought that has occurred to me is that I actually feel more uneasy about the possibility of needing chemotherapy than the idea of losing my breasts, because I don't want to lose my hair. Unlike my breasts, my hair feels very much tied to my sense of self. I love my hair. I would hate to lose it, and I know a wig would not feel the same.

Why I'm Getting a Double Mastectomy

Since I've starting sharing my news, and this blog, with friends and family, I've had a couple people ask me why I'm opting for the double mastectomy, when only a single mastectomy of my right breast is medically necessary.

First, I think it's important to note that such a decision is obviously very personal, and every patient needs to make their own decision based on their diagnosis and medical history, in conversation with their medical professionals, and taking into consideration their own priorities and feelings about self-image. Each person's thought process will be unique to them, and what feels right to one person might not work for someone else. This post is just a record of my personal decision.

If you ask me to describe myself, I would say I am nothing if not thorough! (As evidenced by this blog...) But in choosing words to describe me, a close second might be "risk averse". I will always wear my seat belt, I will always bring along an umbrella, or a light jacket, just in case.

This whole process - from finding the lumps to making appointments and having mammograms and ultrasounds and then an MRI and biopsy and waiting for phone calls with news - has been super stressful. I NEVER want to go through it again.

At this point, my doctors and nurses have told me that my MRI shows "something" in my left breast. That means it's possible I already have cancer in my left breast. Also, the "variants of unknown significance" in my genetic testing say I "may" have a hereditary risk; it hasn't been ruled out. Combined with the fact that I do have a family history of breast cancer (two paternal aunts had it), all of it together means there's a real possibility of having to go through this whole process again in the future for my left breast. Just, no.

I might have worried about being overly aggressive by opting for the double mastectomy, except my breast surgeon characterized the decision as a "shared decision" established by us both together. It definitely offers the most peace of mind, which is important to me as someone who is prone to anxiety.

My top two priorities right now are:

1. Get rid of the cancer that's in me now.
2. Reduce the risk of cancer coming back.

Even with a double mastectomy, my NP says there's still a 1-3% chance of recurrence. It's not 0%, but if that's the lowest possible risk, I'll take it.

Secondary to reducing my risk of recurrence and increasing my peace of mind was considering my self-image. It's hard to know how you would feel in a situation until you are actually in it, but the idea of being "lopsided" actually makes me feel more uneasy than the idea of just being symmetrically flat. I'm not worried about questioning looks or judgmental comments, I'm sure to get those either way.

With a single mastectomy, I could still opt for reconstruction or wear a prosthetic, but from what I gather, they don't always look symmetric anyway. It would just be one more thing to worry about before leaving the house, like, "Do my boobs look even?" And for someone who already doesn't prioritize fashion or style or appearances in general, it just seems like something I'd rather not worry about.

One thought that did occur to me was, if I were younger, and still planned on having children, I would absolutely want to keep my left breast in the hopes of breastfeeding any future babies. But I don't plan on having any more kids. I appreciate that I was able to breastfeed both my kids, and I feel like my breasts have served me well. It's okay if they have to be removed. Like one of my aunts pointed out, a breast is not a vital organ.

So, interestingly, I find myself having kind of a Marie Kondo type attitude. Haha. Due to the cancer, my breasts no longer spark joy for me. Before getting rid of them, I am thanking them for having served their purpose.

9/5/19 Update: After my surgery, the surgical pathology found cancer in my left breast, validating my decision to have a double mastectomy!