Did it seem like that last post ended a little abruptly? Well, apparently I didn’t hit Save on that last post, but I hit “Save and Publish” instead. That’s a fun discovery!
Where were we? Ah, yes. The pathology report. Like I said, overall the report showed good response to the chemo. Now to the outstanding questions.
When I was in the OR, all four lymph nodes that were removed tested negative for malignancy. But in the final pathology report, one of the lymph nodes tested positive. It’s the original lymph node that we’ve known about all along. It is the only lymph node that has tested positive in any of the tests I’ve had. My surgeon warned me about this as a possibility - the biopsies done in the OR have a 10% false negative rate.
The normal protocol (they call it “standard of care”) in this case is to go back in and have an axillary dissection. It would be a huge disappointment, but I’ve also known this was a possibility all along. Since I’ll be doing radiation and hormone therapy (plus the fact that no other lymph nodes are involved), my surgeon is open to not doing the axillary dissection. So she plans to take the question to the tumor board.
A quick interlude for a moment regarding the tumor boards: This is where a whole host of oncologists and specialists get together and review the case. They will even look at the tissue samples and then they make recommendations for treatment options.
Just after my diagnosis, my oncologist took my case to the tumor board as well. I’m incredibly grateful for a group of ridiculously smart people reviewing my case. I’m also very much looking forward to the day that I become boring again to my doctors.
Back to the outstanding questions. The pathology report also showed one incredibly tiny area (0.5mm to be exact) with malignancy just under my right nipple. Same story with the lymph nodes - typically the standard of care would be to go back and remove the nipple. But in this case, the sample taken had really clean margins basically the rest of the tissue in that surrounding area is gone. She’s taking the question of whether surgery is necessary in this case (or not) to the tumor board as well.
Of course, I’m not wild about needing any more surgery. The recovery has been so much more challenging than I expected. Two weeks after surgery, my entire body aches right now like I ran a half marathon without training. (I distinctly know this pain as I did that a few times before kids when I was younger and stupider and in much better shape. Also, yes, that was a humble brag but let me have it because I highly doubt I’ll ever be able to do it again.)
I absolutely hate having to take narcotics for pain because they cause all kinds of other issues. Seriously friends, never again underestimate the value of a good poop. I’m deadly serious.
But I don’t want to make the decision based on my short-term pain and discomfort. These are long-term questions to ask myself.
The big question from my surgeon was this: if the tumor board comes back with the recommendation of not doing the surgeries, how will I feel about the potential risk long-term? It’s nearly impossible for them to quantify what the risk might be. It’s why they typically recommend surgery and removal. But there’s also so much about cancer that is complicated and that they don’t know. There aren’t any studies to tell us about the long-term risk change (if any) for not doing the surgeries.
There’s also this: There is no way to reduce my risk of recurrence to zero. I’ve been sitting with this fact for a while. I still wouldn’t say that I’m comfortable with, but I’m learning to sit with it. I have a chair reserved.
Ultimately, this will be my call to make. At this point, I see myself relying heavily on the recommendation of the board, of course. But I’m also thinking long and hard about the quality of life issues present here too. If I am going to have those 60 years my oncologist talked about, I want them to be active and as healthy as possible.
The tumor board is tomorrow (Wednesday). If surgery for the lymph nodes if the course of action, it will likely happen within a week. So things could move pretty quickly.
If you think of me, please send thoughts for clarity and confidence in the decisions.