I'm about three weeks into diagnosis and already drowning in options. My oncologist at Cleveland Clinic is pushing HIPEC surgery followed by chemo, but I've also gotten second opinions from two other centers and they're saying different things. One wants surgery first, the other wants neoadjuvant chemo to shrink it before surgery.
I worked at Johns-Manville on Euclid Ave from 1978 to 1985 in insulation manufacturing, so my exposure timeline is pretty clear. That actually helped narrow down where the meso came from, which is weird to say but at least there's no mystery.
Here's what I'm trying to figure out. When you're looking at treatment centers, what actually matters? I've read the studies about multimodal therapy having better outcomes than single modality, but every center I talk to frames their approach as "multimodal" and they all mean something slightly different. One's doing EPP with HIPEC, another's doing CRS with HIPEC, another wants aggressive chemo induction first. I have access to decent medical libraries through my former union and I've been pulling PDFs, but I'm getting lost in the methodologies.
The specific questions I can't find good answers for. Does it matter if the surgeon has done 50 meso cases vs 200? I know volume matters for pancreatic cancer, is it the same here? What should I be asking about their pathology review process? And how do you actually evaluate whether a center's "multimodal" approach is coordinated or just throwing three things at you because they each have that department?
I'm keeping a symptom journal and tracking my CA-125, so I'm comfortable with detailed medical conversations. I just don't want to make this decision based on which doctor has the nicest bedside manner or which center's website looks most professional.
Anybody else gone through this evaluation process? What questions did you ask that actually changed your decision?