Here I am once again…facing decisions that require me to extensively research and self advocate.

Pathology is back.

They originally told me my only option was a total mastectomy. I fought tooth and nail for nipple sparing. Had I not argued it, nobody would have suggested it. I was still warned left and right like some doomsday episode that it might not take and I might end up with necrosis. I still fought for it. Guess what? My skin and nipples have very clear margins. I am THRILLED about this. My incision and nipple look fantastic. There are no issues. I am glad I spent nights awake deciding if I would argue for this or not. In the end it was SO WORTH it.

I then spent many weeks agonizing over the research study on my lymph nodes. In the end I decided to participate. Preliminary pathology says that of the 7 nodes pulled, the two first sentinels “might” have isolated tumor cells. The slides have been reviewed by the entire breast pathology team and have been escalated to other pathologists – they still don’t know for sure. They are doing more tests.

This is not even micromets. It’s isolated tumor cells – and only a scant number of them, if that. I am not eligible for the study for this reason. Per the study and staging guidelines I am node negative. My breast surgeon on the other hand, seems to think we need to pull all my nodes ASAP due to this result.

Now lets say I had the sentinel node biopsy and had 4 nodes full of tumors – with the study, I still ran the chance they would leave my auxiliary 1 & 2 and just radiate instead. When I was considering the study EVERYONE at SCCA seemed to think radiating was the way to go and that I should absolutely participate in the study. Now I’m not eligible and they think that pulling the nodes for essentially zero cancer is the way to go? I’m so confused (and frankly, concerned) how their opinion just seemed to flip the other direction. I am mostly confidant in my choice to use SCCA for my care as they are the only NCI institution in Seattle, but above all, they are a research and education facility and I am just a statistic.

After reading through both studies I found recommended my in charts, it has started to become clear that my care plan was scheduled to fit me into trial criteria. I don’t like how the story changes once they find I can’t participate in the trial they were prepping me for. I know my radiology oncologist wanted me as her patient. She is the one running the study and I was a good specimen. This particular doctor doesn’t radiate on tissue expanders, so my team told me “nope, no tissue expander for you” without even really explaining why. Once I researched, pushed back and started to question it, everyone agreed I could have a tissue expander. It goes in on Monday. Once again, if I hadn’t fought for myself….

Today they tried to rush me into scheduling for my node dissection for 3 weeks from today. I said no. I’m not doing this without full pathology being completed. I’m not doing this without talking to radiation and my oncologist. Today was the FIRST time in this 6 month journey where I was told there is a new plastics option to rebuild the lymph system when the nodes are removed. The surgeon and plastic surgeon partner up and it’s a same day procedure. SCCA/NW/UW have three plastics that are skilled in this procedure. If I hadn’t fought what I was told, nobody would have informed me of this.

My gut vibe says a few isolated tumor cells in the first two nodes, with the subsequent ones already negative, means the rest of my lymphatic system is likely negative as well. I’ve already agreed to 6 weeks of radiation to “mop up any stray cells”

I’m not an idiot. I would never fight against chemo, or hormonal therapy, etc. However, I feel the battles I’ve decided to fight have all had a good outcome towards my quality of life.

I think I’m going to fight this surgery. My gut has been right every step of this process so far. Why roll over and submit now?

However I am SO tired of fighting. I’m sure my doctors are tired of me fighting them. I’m sure they’re just as tired of my excessive questions as I a of reading medical research documents at 1am while trying to decipher the language of an industry I’m not in. It’s exhausting.

But in the end, I am a person and not just a piece of research data.

Feel free to reach out to me with your thoughts.