So Joe's diagnosis hit us in September and by October we were already getting calls from different centers and honestly I had no idea what questions to even ask. I kept thinking back to my teaching days when parents would ask me how to pick between schools and I realized I was doing the same thing here, looking at rankings instead of asking what actually mattered for their kid.
We ended up at MD Anderson because their surgeon, Dr. Patricia Lim, had done over 200 pleurectomy decortication procedures in the last five years. That felt concrete to me. Not just "experienced" but actual numbers. We asked about their complication rates for our specific stage and they had data going back years, not just marketing stuff.
The other thing nobody tells you is to ask about their timeline. One center wanted to do six weeks of chemo before surgery and another wanted two weeks. When I asked why the difference, the second one actually explained their reasoning instead of just saying "that's our protocol." That told me they were thinking about Joe specifically, not just running everyone through the same machine.
I also called the centers and asked to talk to someone who'd had surgery there in the last year. Not through official channels but like, actually someone whose husband had been through it. MD Anderson connected me with a woman named Patricia from Sugarland and we talked for maybe twenty minutes and she told me the real stuff that mattered like where to stay, how the follow up actually worked, whether they actually called you back when they said they would.
Survival rates are important but honestly those numbers get thrown around so much and depend on so many things like stage and age and whether people finish treatment. What I cared about was did they have experience with stage III pleural specifically, and could they explain why their approach made sense for that stage.
We're about two months into immunotherapy now and I'm glad we asked all those questions because it meant when complications came up, we already knew the team and they knew us and we could actually talk about it instead of me being on the phone trying to figure out who to call.