So I'm about six weeks out from diagnosis and I'm at the point where I need to actually decide on a center for HIPEC surgery. I've been tracking my symptoms since August (abdominal bloating, early satiety, constipation on and off) and my pathology came back peritoneal, Stage II, epithelioid. I worked at the Johns-Manville plant in Cleveland from 1978 to 1985 so I've got solid exposure documentation.
I know volume matters. I've read the studies about how centers doing 20+ cases a year have better outcomes than the ones doing five or six, but I'm trying to figure out what else actually separates the good programs from the mediocre ones. My oncologist here in Ohio keeps mentioning Brigham and Women's in Boston and also someone at MD Anderson, but I want to know what questions to ask before I just pick based on reputation.
Here's what I'm tracking so far:
- How many HIPEC procedures they do per year
- Whether the same surgeon does the cytoreduction and whether they do their own HIPEC heating or hand it off
- What their median overall survival is for Stage II peritoneal cases specifically, not just pleural lumped together
- Whether they have an integrated oncology team or if chemo comes from a different group
- Post-operative complication rates and how they define them
I'm also wondering about less obvious stuff. Like do they have experience with patients who had previous abdominal surgery (I had a hysterectomy in 1998) because that changes the difficulty. And what's their readmission rate within 30 days.
Anyone been through this decision and figured out what actually made the difference in how things went? I'm trying not to just go with whoever sounds most confident on the phone.