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comparing treatment centers for peritoneal meso - what metrics actually matter

Patient · · 2,719 views
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?

12 Replies

Patient
Man, you're asking exactly the right questions and it shows. I didn't have to deal with all this for my pleural case but I know enough guys who went through the peritoneal route and yeah, it's like trying to compare engine rebuilds when you can't see under the hood.

Here's what I picked up from watching my buddy Mike navigate this last year. He got his HIPEC done at University of Michigan and the difference was night and day once he actually got on the phone with their surgical coordinator, not just the general intake line. She could tell him straight up how many peritoneal meso cases their surgeon had done in the last three years, not just some vague annual number. They also had their complication rates broken down by type which actually meant something.

The case volume thing you're running into is real. One center telling you 60 cases but including all abdominal stuff is basically useless info. Mike kept pushing until someone gave him the actual peritoneal meso number. I think it ended up being around 18-22 a year at Michigan but the surgeon had 15 years doing it specifically so that mattered more than just the volume.

When they wouldn't give him numbers or kept handing him off, he just moved on. That's your gut telling you something and honestly if they can't answer questions from a potential patient before surgery, what's that say about how they communicate after? We're talking about your insides here.

One thing that helped Mike was asking what their recurrence rates looked like at 1 year and 3 years, not just 5. Felt more honest to him since meso moves fast sometimes. And he specifically asked how many of their patients went on to get the chemo tune-up after HIPEC, because he wanted to know if they were actually doing the full protocol or just the surgery part.

Good luck with this. You're doing your homework right.
Patient
Did Mike's coordinator actually break down their specific peritoneal case volume for him, or was that something he had to dig for? I'm curious because the surgical coordinator angle makes sense - I've noticed the front desk people sometimes don't have access to the detailed stats I'm looking for. And if you know how his outcomes have tracked, I'd be really interested to hear whether the center's reputation matched up with his actual results so far.
Medical Expert Response
The questions you're asking are exactly the right ones, and the fact that one center couldn't give you a volume number without a handoff is actually meaningful data about how they communicate with patients.

On the case volume issue, the 2022 paper you found is likely referencing work that's consistent with what Sugarbaker and colleagues have published over the years showing a volume-outcome relationship for cytoreductive surgery with HIPEC. But you're right to be skeptical of how centers count cases. "Peritoneal surface malignancy" programs often lump colorectal, ovarian, appendiceal, and meso together. When I advise patients on this, the number that matters is meso-specific HIPEC cases per year, not the broader category. Anything under 10 mesothelioma-specific cases annually and I'd want to understand why they're presenting themselves as a referral center.

The case selection problem you identified is real and honestly underappreciated. A center reporting 40% five-year survival in a population that skewed toward epithelioid histology (cell type) and low peritoneal cancer index (a scoring system that measures how far disease has spread in the abdomen) is not the same as 40% in an unselected population. Ask them directly what their median PCI was in their reported cohort. If they can answer that without hesitation, that tells you something.

For complication rates, the Clavien-Dindo classification system is the standard way serious programs report surgical complications. If a center can tell you their rate of grade 3 or higher complications using that system, they're tracking outcomes rigorously. I've seen centers quote complication rates under 10% that turn out to be counting only events requiring reoperation, not things like prolonged ICU stays. The definition matters enormously.

Your oncologist's advice about asking for the specific surgeon's numbers rather than the program's aggregate is solid. One thing worth asking is whether the surgeon you'd actually be operated on by has done at least 50 HIPEC procedures personally, and whether they trained with a high-volume program. The Peritoneal Surface Oncology Group International has a list of training programs that carry some weight.

Please talk to your own oncologist about any of this before making decisions, especially the volume thresholds since your specific situation matters more than any general benchmark.
3 found this helpful
Patient
That handoff thing has been bothering me ever since it happened, so it's good to know that's actually a red flag and not just me being paranoid. And thanks for confirming that 2022 study - I've actually read some of the Sugarbaker papers too, which is partly why I'm being so picky about the volume numbers. The mixing in of other abdominal cancers really does muddy things.

So when you say the volume-outcome relationship is consistent with his work, are you talking about the cytoreduction outcomes specifically or the HIPEC complications too? I'm trying to figure out if a center that does solid debulking but maybe isn't as experienced with the hyperthermic perfusion part is still workable, or if those skills really need to be bundled together.
Medical Expert Response
The volume question you're wrestling with is real and the inconsistency you're getting is actually pretty common. The 2022 study you found is likely the Sugarbaker group's analysis out of Washington, and the 20-case threshold for peritoneal meso specifically is a reasonable benchmark, but you're right to be skeptical when centers start bundling all abdominal cases together. That's a meaningful difference.

The metric that actually changed how I advise patients on this is completeness of cytoreduction score, specifically what percentage of a center's patients achieve CC-0 or CC-1 (meaning no visible residual tumor or residual nodules under 2.5mm after surgery). A center can quote you a 5-year survival rate all day but if they're not achieving CC-0 in the majority of their meso cases, the comparison is essentially meaningless. I'd ask for that number directly.

On the complication question, ask specifically about grade 3 or higher adverse events using the Clavien-Dindo classification. That's a standardized scale so you can actually compare across centers. If they don't know what you're referring to, that tells you something.

The handoff you experienced when asking about surgeon-specific case volume is worth noting. At a high-volume center like the one at Brigham and Women's or the PCI program in Pittsburgh, that question gets answered without hesitation because the surgeons are tracking it themselves.

And honestly, your oncologist should be helping you get these numbers, not just telling you what to ask. Please do loop them in on what you're finding, they may be able to make direct calls to programs they have relationships with.
3 found this helpful
Family
You're asking exactly the right questions and honestly most centers won't give you straight answers which tells you something. My dad's surgeon at Northwestern was upfront about his case volume and complication rates without me even having to push, and I think that transparency mattered as much as the actual numbers.
Patient
That transparency point is huge and honestly I hadn't thought about it that way until you said it. Did your dad's surgeon volunteer that information unprompted or did you have to ask specifically? I'm trying to figure out if the centers being evasive is just a liability thing or if it actually correlates with worse outcomes. Northwestern keeps coming up in my research too so that's encouraging to hear.
Medical Expert Response
The 2022 study you found is the Sugarbaker data, and the volume threshold question is actually something I followed pretty closely when it came out. The 20 case per year minimum for meso specifically is still the most cited benchmark, but you're right to be skeptical about how centers count. When I was advising a patient in early 2023 who eventually went to a center in Pittsburgh, we spent about three weeks just trying to get apples-to-apples numbers before we could compare anything meaningful.

Here's what actually cuts through the noise. Ask them specifically: how many HIPEC procedures for malignant peritoneal mesothelioma did your team complete in the last 24 months. Not abdominal cancers broadly. Not cytoreduction generally. That specific disease, that specific procedure. A good center will have someone who can answer that without transferring you twice.

The survival rate comparison problem you identified is real and honestly undersold. Centers that do higher volume tend to have more complete cytoreduction (CC-0 or CC-1 resection, meaning no visible remaining tumor or only tiny deposits) and that single variable predicts outcomes more than almost anything else in the literature. So you can ask them directly: what percentage of your peritoneal meso patients achieve CC-0 at the time of surgery. If they can't tell you, that's information too.

Complication rates are reported so inconsistently across centers that I usually tell people to ask about grade 3 or higher complications using the Clavien-Dindo classification (that's a standardized scoring system for surgical complications). That at least forces them to give you a number that means something.

The handoff you experienced at that one center actually is a reasonable signal. Not definitive, but at high-volume specialized programs, the patient coordinators typically handle these questions regularly.

Please do loop in your own oncologist on whatever you find, because case selection and your specific staging matter enormously for interpreting any of this.
3 found this helpful
Patient
That's really helpful to know the Sugarbaker data is still holding up. Three weeks to get comparable numbers sounds frustrating but also kind of reassuring that someone actually did that legwork instead of just taking their word for it. Did the Pittsburgh center end up being transparent about how they were counting their cases, or did you have to dig through their IRB submissions or something to get the real picture?
Medical Expert Response
What you're doing here is genuinely hard, and the frustration of getting inconsistent answers from three different centers is real. That kind of confusion can make you feel like you're doing something wrong when you're actually doing everything right.

The volume question is one I've seen trip up a lot of families. When we were helping a patient work through this back in 2021, we eventually learned to ask specifically "how many cytoreductive surgeries with HIPEC did your team perform for peritoneal mesothelioma patients in the last 12 months" and write down exactly what they say. If they hedge or reframe the question back to you, that itself is information. The center that wouldn't give a number at all... I'd keep that in mind.

On the survival stats piece, you're right to be skeptical. Case mix matters enormously. A center treating mostly epithelioid type in earlier stage patients will show better numbers than one taking on complex recurrences. You can ask them directly what percentage of their HIPEC patients had an epithelioid histology and what the median PCI score was for their last 50 cases. Not every coordinator can answer that on the spot, but a high-volume center should be able to get you that from their database within a week or so.

The 2022 study you found is solid. The 20-case annual threshold for peritoneal meso specifically has held up in the literature pretty consistently.

If you're finding this research process is also wearing on you emotionally, which honestly would make complete sense given everything, talking with an oncology social worker could help. For something this persistent, professional counseling is worth pursuing alongside all of this.
3 found this helpful
Patient
Your point about volume being the trip-up question really resonates with me because that's exactly where I hit the wall. When I asked about "peritoneal cases" I got three different interpretations, but asking specifically about cytoreductive surgery plus HIPEC together - that's the precision I needed. Did the patient you worked with end up finding a meaningful difference once they got that clarified answer, or were most centers in their area pretty similar once you dug into the actual numbers?
Patient
yeah that handoff thing would bug me too, sounds like they weren't ready for the question which is kinda a red flag. i'd push back and ask to talk directly to the surgeon or someone who actually knows his stats, not just the intake coordinator.

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