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multimodal therapy and finding a surgeon who actually knows what they're doing

Patient · · 1 views
So I'm at the point where I need to make a decision about HIPEC surgery and I'm realizing that not all surgeons are the same, obviously, but I'm struggling to figure out what actually separates someone who does multimodal therapy well versus someone who just says they do it.

I got my diagnosis in November and I've been doing research for about six weeks now. I worked at the Johns-Manville plant in Cleveland from 1978 to 1985 in insulation manufacturing, so I have a clear exposure history and that's helping with the legal side of things. But the medical side is what's eating at me right now.

Here's what I'm trying to figure out: when a surgeon says they do multimodal therapy, what should I actually be asking them? I keep seeing case volume numbers thrown around but I'm not sure if that's the real metric that matters. Is it the number of HIPEC procedures specifically? The number of peritoneal cases? How recent are their outcomes? One surgeon I talked to mentioned their five year survival rate but didn't break it down by stage and that felt... incomplete.

I'm also trying to understand the coordination piece. Like, do they have an actual team approach where the medical oncologist and the surgeon are talking before and after, or is it more fragmented than that? I read a study out of Brigham that suggested the timing of chemo relative to surgery matters significantly but I don't know how to assess whether a given center actually has that dialed in.

And maybe this is obvious but I'm asking anyway: does the surgeon need to be at the same institution as your chemo team, or is it OK if they're separate as long as they communicate? I'm in Cleveland so I'm looking at some bigger academic centers but I'm also considering traveling if it makes sense.

I have my symptom journal here and my pathology report is peritoneal mesothelioma, Stage II, which my understanding is that HIPEC is worth serious consideration. I'm trying to make an informed decision and not just pick a name I recognize.

1 Reply

Patient
Man I feel you on this. When I got my Stage I pleural diagnosis back in December I thought I'd done my homework but then you realize there's homework and then there's actually knowing what you're looking at, you know?

So here's what happened with me. I found a surgeon at U of M who had done EPP surgery on mesothelioma cases and I asked him point blank how many he'd done in the last three years. Not lifetime, last three years. He said 47 and then he walked me through his actual protocol with the medical oncologist, showed me the calendar, showed me when chemo started relative to surgery. That specificity meant something. It wasn't just a number, it was proof he had a system. I had my surgery in February and recovery's been solid so far.

For your HIPEC question I'd ask them the same way. Don't let them give you vague stuff. Ask them how many peritoneal cases specifically, what their complication rates actually are broken down by type, and whether the oncologist who'll be giving you chemo before and after is literally in the same building or if it's gonna be phone tag between two hospitals. That coordination piece is real. My surgeon and oncologist were on the same team and it made a huge difference with timing.

The five year survival thing without stage breakdown is a red flag honestly. That's like a mechanic telling you he fixes cars real good without saying whether he's talking about oil changes or transmissions. Stage II is different than Stage IV so you need numbers that match your actual situation.

And traveling for the right surgeon beats staying local for the wrong one. I'd rather drive to Ann Arbor than wonder if I made the right call.

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