I've been doing a lot of research since my diagnosis in November and I keep running into the same problem. Everyone says find a specialized center but nobody really explains what you're supposed to be looking at to actually compare them.
Right now I'm evaluating a few places for HIPEC surgery and I found myself staring at their websites not knowing if their 5-year survival rates are even calculated the same way or if one center's patient population is just younger or earlier stage. Like, how do you know if a center's outcomes are actually good or if they're just selecting easier cases?
I called three different centers and got completely different answers about their case volume. One said they do 40 peritoneal cases a year, another said 60 but then clarified that includes all abdominal cancers, not just meso. The third wouldn't give me a number at all which made me suspicious. I found a study from 2022 that suggested centers doing at least 20 peritoneal meso cases annually had better outcomes but I don't know how current that is.
I'm also trying to figure out what questions to ask about their complication rates, how they report them, whether they're tracking recurrence at 2 years vs 5 years. My oncologist said to ask about the surgeon's specific experience with cytoreduction and HIPEC but when I did that at one center the person I talked to had to hand me off to someone else which didn't inspire confidence.
Has anyone actually gotten this information from centers? What did you end up prioritizing when you were choosing where to have surgery?