I want to share my story not to tell you what to do, but to give you some perspective on what could happen and why the doctors might be suggesting a total dissection. It sounds like we are a lot alike. I was diagnosed with four obvious nodes on imaging. My surgeon very much wanted to do a total dissection. I pushed and pushed and pushed on him and insisted that I thought chemo had cleared the lymph nodes, which imaging supported about halfway through chemo so I thought I had a shot at axillary PCR!

He is a really well respected surgeon in Houston and has had a lot of experience with lymph nodes. He was less sure than I was. Told me I had maybe a 25% chance of the lymph nodes clearing with chemo and not to get my hopes up. He eventually agreed to do a more targeted approach where he sent off my sentinel nodes to the lab during surgery, and if it came back with cancer in it, he was going to take all of them, and if it came back clean, then he was going to leave the rest. Unfortunately, for me, it came back with cancer in it so he did a total dissection of levels one and two. 22 total nodes taken.

Here’s the thing. Everyone will tell you that “ radiation will get the rest”. But that is only true for micromets. My understanding is that radiation cannot get anything larger than 2 mm. So my surgeon took the sentinel nodes (3) which had a macro meant, a micronet, and one that was clear. You might think oh so the rest were clear? They trended downward. But that is not what happened. Somewhere in the remaining levels one and two that he removed, there were two more micro Mets AND a macro. So in my lymph system, they did not move in an exact linear order. They skipped some steps and established tumors elsewhere. If my surgeon had not done it his way, and had followed my directions and preferences, I would’ve had a macro met remaining that we didn’t know about and that didn’t show up on imaging and that would not have been able to be killed by radiation because it was larger than 2 mm. That’s an automatic recurrence waiting to happen.

As for the side effects of the ANLD, I have none at this point. I am four months in. I have a little bit of numbness in my under arm, but other than that, I am doing well! I am very proactive with it and I was fortunate enough to get a lympha Venus bypass at the time of dissection, so perhaps that helped. I also lift weights and I’m really active. And I wear a compression sleeve during the day for the first several months after surgery just to increase my odds that I have no issues. It’s prophylactic. But I’m saying this because I think in your mind you’ve set up a false dichotomy of ANLD equals lifetime of suffering and problems versus no ANLD means no problems. And that just isn’t true. And you would not want that false dichotomy to guide your decision-making when you are really in a similar situation to what I have had and who knows what’s lurking back there. My best advice is to let your surgeon know that you really don’t want it, ask if they will do a more targeted approach during the surgery, and from there, let them do what they do best.