So Joe got diagnosed in September and we spent like two weeks just looking at places before we committed to anything. I kept thinking back to how I used to pick curriculum, you know? You don't just grab the first thing that looks good, you actually sit down and figure out what matters for YOUR situation.
We ended up at Moffitt down in Tampa which was lucky for us location-wise, but here's what we actually checked:
First thing was whether they had a meso team, not just a general oncology department. That sounds obvious but we called three places that said "yeah we treat mesothelioma" and when we dug in they meant they'd seen like two cases total. Moffitt has a whole multimodal program where the surgeon and the chemo oncologist and the radiation person all actually talk to each other before they make a plan.
Second was asking about their surgery numbers. Not just "do you do pleurectomy" but "how many did you do last year and what were the complication rates." We got actual numbers from Moffitt and they were doing around 40-50 a year. The surgeon there, Dr. Elias, has been doing meso cases since like 2008 and it shows because he's not treating it like it's the same as regular lung cancer.
Third thing nobody really talks about is whether they're connected to clinical trials. Joe started immunotherapy in November and part of that was because Moffitt had actual trial options for his stage and they walked us through which ones made sense for him versus which ones were just... options that existed.
Also check if they have a patient navigator or somebody whose job is literally just helping you figure out logistics. That person has been worth more than I can even say because she knows what questions to ask the doctors and she knows the insurance stuff and she just... handles things.
And honestly ask them point blank about their outcomes for your specific stage. If they won't tell you or they get vague, that's a red flag. We wanted to know what the median survival looked like for stage III pleural with their multimodal approach and they gave us actual data.
Last thing is just how you feel in the room with them. I know that sounds soft but when the surgeon sat down with us and actually explained what he was going to do and why and what the trade-offs were instead of just telling us what to do, I knew we were in the right place.
The whole process took us like three weeks of calling around and visiting two centers before we landed on Moffitt. It felt slow at the time but honestly I think it saved us a lot of headache down the road because we're not second-guessing the plan every other week.