how we actually picked Joe's treatment center - what mattered and what didn't

This is exactly where I'm at right now, honestly. I got my diagnosis in November so the timeline is fresh, and I'm currently looking at HIPEC surgery options because I have peritoneal, not pleural like Joe, but the principle you're describing feels the same.

I've been doing a lot of research on this. There's actually a 2023 study in the Journal of Surgical Oncology that looked at outcomes for cytoreductive surgery with HIPEC and found that surgeon experience and case volume were independently associated with better peritoneal cancer index scores and longer median overall survival. So you're not just being practical, you're looking at the data too.

What's been helpful for me is keeping a spreadsheet with specific questions. I call and ask: how many CRS-HIPEC procedures did you do last year, what's your median operative time, what's your protocol for peritoneal lavage temperature and duration, who manages the post-op chemotherapy. The answers vary wildly. One center told me they do "around 20 or so" which honestly made me nervous. Another one had the numbers right there because apparently they track it.

The team thing you mentioned about Joe's chemo nurse is real. I asked one place point blank who would be managing my chemo schedule post-op and they kind of hemmed and hawed. That told me something.

I'm leaning toward Cleveland Clinic because they've published on their HIPEC protocols and the surgeon I spoke with has done over 300 cases. It's not the closest option either but that felt worth it.

Are you tracking how Joe's doing post-op with the immunotherapy piece?

I'm coming at this from the other side since my dad was already diagnosed when I came into it, but yeah the team piece is absolutely critical and I wish someone had hammered that home to us earlier. We did eventually get the EPP at Northwestern in November after he'd been on palliative care for a bit, and honestly the deciding factor wasn't the surgeon's name, it was that their palliative care doc actually talked to the surgical team before we even went in. Like they had a conversation about what his quality of life goals were, not just "can we cut this out."

What I noticed watching this as both a provider and a daughter is that you can ask all the right questions about volume and experience, but if the anesthesiologist doesn't know your dad's baseline cognition or his pain tolerance or that he gets anxious with certain meds, you're starting from zero in the OR. We spent like an hour with the anesthesia team going over his whole history because they actually wanted to know. That matters for recovery more than people realize.

The immunotherapy protocol thing you mentioned, yeah we had that mapped out too but ours shifted twice because of how he toleratred the surgery. So ask about flexibility too, not just the plan on paper. Ask if they'll adjust based on how the patient actually does, not just the textbook response.

Patricia, with peritoneal are you looking at centers that do HIPEC specifically or are you open to other approaches? That might change the whole "how many do they do" calculation.

You're so right about the team thing. When we were looking around I kept getting distracted by "ranked #1" this and "world renowned" that and Joe finally just said "Angela you're doing what you do with lesson plans" and I was like... yeah okay he got me. I was trying to create the perfect curriculum when really I just needed to know the teacher could actually teach.

We asked about volume too and honestly it was eye opening. One place quoted numbers that sounded impressive until we asked if that included consultations or actual surgeries and suddenly the number got way smaller. The place we went with in Jacksonville was really straightforward about it. Over 110 EPP procedures in the last three years. Their surgeon trained under someone at MD Anderson back in the early 2000s. That history mattered to us even though it wasn't flashy.

The follow-up oncologist thing is what really got us though. We didn't even think to ask until someone here mentioned it. Turns out Joe's chemo oncologist actually sits down with his surgical team every single week to talk about cases. Like they're not siloed doing their own thing. That coordination has made such a difference because when he had some weird side effect in week two of treatment they already knew his surgical status and his baseline scans and nobody had to rehash his whole story.

One thing I'll add since I taught for 32 years and learned this the hard way... ask them to walk you through what happens the week after surgery. Not the surgery itself. The week after. That's when you find out if they're actually organized or just good at the presentation part.

How far are you willing to travel for treatment? That might be narrowing your search too much.