Tumor Board update

Thank you so much for the messages and for sending positive thoughts and energy our way. I wanted clarity and that’s what we got.

The recommendations from the tumor board were a strong consensus on both questions.

First up is the big news: No axillary dissection. This is HUGE and the one outcome I was worried about the most. It would have been another fairly intense surgery and carried pretty significant long-term implications. But it’s not recommended. “Radiation instead of axillary dissection” was the official recommendation. Radiation was part of the treatment plan all along, even though I did have a small hope some time ago that radiation might not be necessary. But that really was just my own wishful thinking. If given the choice, radiation is much preferred. (And that’s a phrase I never imagined myself uttering.)

The second question was about the nipple removal, which is recommended. I’m not thrilled about this prospect, but I understand the rationale. They consider the risk of recurrence too great when you weigh it against something that is considered “cosmetic” at this point. Though I think maybe I would use a different word than cosmetic. I get it - there is less function now that I’m past breastfeeding and less utility to the body’s functioning than say, my lymph nodes. But nipples are also way more than a really good eyeliner.

Regardless, I’m coming to terms with it. My surgeon said that if I have a recurrence five years down the road that originated from here, I would regret not having made the decision now. I suppose that’s true, but again with the series of shitty options. The good news is that this surgery is pretty “easy” (as these things go, anyway). I’ll go home the same day and they won’t even need to use general anesthesia.

My biggest issue for me right now is the muscle pain in my legs. Five days later, I still feel like I ran the half marathon with no training. It hasn’t gotten any better. I never want to be the person to stump the doctors but here we are. The current theory is that I’m having a rare reaction to the second antibiotic I’m on. (Which we switched to because of the bone pain.) So, here’s to hoping for antibiotic #3 and some kind of relief from the pain. Also, while I’m putting my requests out in the universe, maybe not a new pain with antibiotic #3.

One last note before I go: For the first time in a long time, I went back and forth trying to decide whether/how much I should share. Isn’t it weird to talk about your nipples where strangers could read it? Or maybe worse, people you know?? The answer is yes. It totally is.

But it also isn’t. When I was first diagnosed, the first thing I did was start looking online. I was looking for the stories. I soaked up the stories that I found. They made a huge difference for me to be able to visualize some of what was coming. They still do. Whether they are blogs I have found or Instagram accounts I follow, the stories that resonate the most for me are the most honest. Especially when it comes to how cancer treatment affects the body in a million different ways. This ultramarathon experience is a physical and mental challenge like no other.

The last eight months my world has revolved around my boobs in one way or another. If I’m going to be honest, I’m going to be honest about the whole experience.

So there you go. I reserve the right to talk about my nipples on occasion.