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picking a treatment center for peritoneal meso - what actually matters beyond the name

Patient · · 54 views
So I'm about three weeks out from my diagnosis and I'm already getting flooded with information about where to go for HIPEC surgery. Cleveland Clinic, Mayo, MD Anderson, some place in Boston I'd never heard of. And honestly it all starts to blur together when you're reading about survival rates and looking at someone's CV.

I worked at Johns-Manville in Cleveland from 1978 to 1985, so I've got some time invested in this city, but I'm not going to pick a surgeon just because they're local. That said, I've started keeping notes on what actually seems to matter versus what's just marketing.

Here's what I'm tracking. First is the volume of peritoneal cases specifically, not just pleural. I found one study from 2019 that showed peritoneal outcomes were significantly better at centers doing 15 plus HIPEC procedures a year. Most places don't break it down that way on their websites, so you have to call and ask directly. When I called around, some of them couldn't even tell me off the top of their head.

Second is whether they're doing hyperthermic intraperitoneal chemotherapy as part of the standard protocol or if it's optional. That matters. And whether the same surgeon is doing the cytoreduction and whether they have an actual peritoneal oncology fellowship trained person on staff versus someone who does it occasionally.

Third, and this one surprised me, is asking about their complication rates and what they consider a complication. Some places report grade 3 and 4 toxicity only. Others report everything. If you're comparing two centers and one won't tell you their rates, that tells you something.

I'm also asking about their follow-up protocol. Like, what imaging do you get and how often. Do they have a meso specific survivorship program or are you just cycling through general oncology. One place I talked to actually has quarterly CT scans built in for the first two years, which seems more rigorous than what I'm hearing elsewhere.

The surgeon's experience with peritoneal specifically matters more than the institution's name, if that makes sense. I'd rather have someone who's done 200 HIPEC cases at a smaller academic center than someone at a big name place who does it twice a year.

I'm still early in this so I'm not done with my calls. But if anyone's already gone through this process I'm curious what questions you wish you'd asked upfront.

10 Replies

Veteran
Man, you're doing your homework right. I'm pleural not peritoneal but went through the same evaluation gauntlet back in October when I got diagnosed, and the amount of noise out there is real.

One thing I'll tell you from my side of this. I had my surgery at Naval Medical Center San Diego in December because I wanted someone who understood military exposure and had done the work before. My oncologist there actually pushed back on some of the standard protocols and said no, here's what the data shows for your specific staging. That kind of critical thinking matters more than the hospital letterhead. The surgeon had done probably 80 plus of these procedures, and you could feel the difference in how they talked about complications and what actually constitutes success versus just getting you off the table.

Your point about asking directly about volume and not trusting the website is spot on. I called the VA too since I'm filing a claim for Camp Lejeune exposure from 78 to 82, and their answers were vague until I got specific. Had to call back three times in November before someone actually broke down numbers for me.

The follow-up protocol thing you mentioned is huge. Ask them too what happens if something looks weird on imaging at month six. Do they jump to biopsy or do they have a protocol for surveillance. And ask if they've got experience with meso recurrence specifically, because treatment changes after you relapse and not every place has thought that through.

You're asking the right questions. Don't let the name brand push you around.
Family
Joe's got pleural not peritoneal so we went a different route, but honestly the stuff you're tracking is exactly right. When we were looking at immunotherapy centers last fall, we ran into the same thing where you call and half the time the person answering doesn't actually know the answer. I remember calling one place in November and asking about their specific protocol for his stage and the receptionist literally put me on hold for like 20 minutes.

The complication rates thing is smart. We asked about that too and I was surprised how defensive some places got. One center basically told us "we don't really track that" which... okay. That was enough for me to keep looking.

What I wish I'd done more of upfront was actually talking to patients who'd been through it at each place, not just reading testimonials on their websites. I finally found a mesothelioma support group on Facebook where people were naming specific surgeons and I learned way more from a 10 minute conversation with someone who'd actually had the surgery than from reading all the marketing materials combined. The quarterly CT scan thing you mentioned sounds really good by the way. That's the kind of detail that matters long term.

You're doing your homework right. Don't let the big names push you around. And if a place seems annoyed that you're asking detailed questions, that tells you something about how they'll treat you as a patient too.
Patient
Yeah that 20 minute hold is frustrating but honestly kind of telling, right? If they can't get you basic protocol info quickly they're probably not set up to handle detailed patient questions down the line. I've had a couple of those calls too where I'm basically waiting while someone's shuffling through papers trying to find the answer.

How did you end up evaluating the immunotherapy centers once you got past that initial contact stage? I'm curious if there were red flags that made you rule some out or if it came down to the actual oncologist you'd be working with.
Family
Joe's got pleural, not peritoneal, but we went through something similar with picking his immunotherapy center back in November. The research phase was honestly harder than the diagnosis itself because you're trying to sound smart on the phone when you're basically googling stuff five minutes before you call.

One thing that really stuck with us was talking to actual patients who'd been through it, not just reading the brochures. We found a couple people on here who'd done HIPEC at different places and they told us things the websites definitely don't mention like how long you're actually in recovery or what the support looks like after you leave. That's when it got real.

The complication reporting thing you mentioned is huge. We asked Joe's oncology team point blank about their infection rates and honestly it felt awkward but they had the numbers ready. If they don't have them readily available that's a red flag. We went with the center that could tell us specifics instead of just talking about their "excellent outcomes."

I'm also gonna say this from a teacher perspective because that's what I was for 35 years, you're doing exactly what good students do when they actually care about understanding something. You're not just accepting what you're told, you're asking follow-up questions and comparing sources. That matters more than you think because you're gonna need to advocate for yourself or for your person constantly over the next couple years.

The quarterly imaging thing is smart. We wish we'd pushed harder on that earlier with Joe's plan. Keep those notes organized and maybe bring them to your appointments written down. Doctors take it more seriously when you're clearly prepared.

How are you feeling about the surgery itself so far?
Patient
I'm actually in a similar spot right now, about four weeks out from my diagnosis so we're basically on the same timeline. I've been doing exactly what you're doing, which is calling around and taking notes because honestly the initial consultations feel pretty polished and you have to dig for the real stuff.

The volume question is huge. When I called Cleveland Clinic I got transferred three times before someone could tell me they do around 18-20 peritoneal HIPEC cases annually. MD Anderson was more straightforward about their numbers but they're also not local so I'd be relocating for surgery and recovery. I found a 2021 retrospective that looked at morbidity rates and the centers crossing that 15 case threshold had noticeably better outcomes, so you're not chasing something that doesn't matter.

What actually made me sit up was asking about their cytoreduction philosophy. One surgeon told me they aim for complete cytoreduction on every case, another said "optimal" which is different terminology and I had to ask what that meant in practice. The first one seemed more aggressive about it. I've been keeping a spreadsheet with surgeon name, their specific peritoneal case load per year, whether they do their own cyto and chemo or if it's a team approach, and their complication reporting methods. It's tedious but you need to compare apples to apples.

The imaging follow-up thing you mentioned caught me off guard too. I'm calling back this week to ask specifically about surveillance protocols because that actually impacts your quality of life after treatment. Quarterly imaging versus annual makes a huge difference in how much time you're spending in scanning machines and waiting for results.

One thing I haven't fully figured out yet is whether to weight surgeon experience more heavily than institutional support resources. Like do you want the best peritoneal surgeon even if their institution is smaller, or do you want comprehensive oncology infrastructure around a good but not elite surgeon. Still working through that calculation. Have you landed on how you're weighing those factors?
Family
My dad has pleural, so HIPEC isn't on our table, but I've watched enough of his oncology team's work to know you're asking exactly the right questions. The volume thing is real. I've seen the difference between a surgeon who does something routinely versus someone who's dabbled in it, and it shows up in complication rates and how they manage the unexpected stuff mid-procedure.

One thing I'd add to your list: ask them specifically about their approach to managing adhesions post-op. This caught me off guard when we were vetting different centers for my dad's initial treatment planning. Some surgeons are more aggressive about lysis than others, and that affects your quality of life afterward. Not every center volunteers that information.

Also call and ask to speak with a patient coordinator, not just the surgical scheduler. The good ones will connect you with someone who's actually been through the procedure at that center. I know that sounds simple but most places have to be asked directly. We did this with my dad's thoracic surgeon back in March and literally had someone call us that same evening who'd had the same stage and could tell us what to expect. That matters for your head space going into it.

The imaging protocol thing you mentioned is huge. Peritoneal meso has different recurrence patterns than pleural, so if a center isn't tailoring their surveillance to that, yeah, that's a red flag. When I was looking at options for my dad we found one place that basically said "come back in six months" and another that built in monthly labs for the first three months. The difference in how aggressively they're monitoring is telling.

You're going to make the right call. The fact that you're doing this homework instead of just picking a name tells me you've got this part right.
Medical ✓ Expert Response
You've done more homework in three weeks than most patients do in three months, and honestly your instincts are right on almost every point here.

The volume question is the one I'd push hardest on. The 2019 data you found lines up with what Sugarbaker's group out of Washington Hospital Center published over years of follow-up showing peritoneal-specific surgical volume correlates more strongly with outcomes than institutional prestige does. And you're right that most places bundle their HIPEC numbers together or count pleural procedures in the same breath. When a coordinator can't tell you the number off the top of their head, that's actually informative.

The complication reporting piece is something most patients never think to ask. Grade 3 and 4 toxicity only versus all-grade reporting can make two centers look wildly different on paper even if their actual patient experiences are similar. I'd ask specifically what percentage of their peritoneal patients required reoperation within 30 days. That's a harder number to obscure.

One thing I'd add to your list, and this one doesn't get talked about enough, is asking who manages the case when something goes wrong at 11pm on a Saturday. Is there a peritoneal fellow in house or does it fall to a general surgery resident who may have never seen a post-HIPEC abdomen. I know of a case where a patient had a good outcome largely because the covering team at their center had specific training. That level of institutional infrastructure doesn't show up in any surgeon's CV.

Your framing about surgeon experience over institution name is exactly how I'd think about it too. Please do loop in your oncologist on whatever you're finding in these calls, because they may have outcome data or relationships with specific programs that aren't publicly available.
2 found this helpful
Patient
That's really helpful to hear, especially the Sugarbaker reference. I actually pulled up some of their older papers but wasn't sure how current the data was. So when you say volume correlates more strongly than prestige, does that mean if I find someone at a mid-tier academic center who's doing 20-30 peritoneal cases a year, that's actually preferable to someone at Mayo doing 8 or 9? I want to make sure I'm not overthinking this and missing something obvious.
Family
I haven't been through this myself since my mom has pleural not peritoneal, but honestly what you're doing right now is exactly what I wish we'd done more of upfront. We kinda just went with who our oncologist recommended and didn't push back on anything and I spent the first month wondering if we'd made the right call.

The thing about asking those specific questions though... I get it now after dealing with all this. My mom's center in Phoenix wouldn't tell us their complication rates either when I asked, just kept redirecting to "our outcomes speak for themselves" which honestly made me trust them less. We eventually found their data through a different route but yeah, if they won't tell you straight up that's a red flag.

One thing I'd add based on what we're dealing with now in August into September, ask about what happens between treatment cycles too. Like the actual day to day stuff. Does someone call to check on her after HIPEC or are you just supposed to know when to worry. My mom had a fever three days after her first round of chemo and I didn't know if that was normal or an emergency and it took forever to get someone on the phone. A center with actual peritoneal experience probably has a protocol for that.

Also the follow-up imaging thing you mentioned is huge. Ask if they have someone who specializes in reading meso scans because apparently that matters too. Some radiologists miss stuff if they're not used to looking at peritoneal cases specifically.

You're asking all the right questions. I'm kinda jealous you're doing this legwork now because honestly it makes me feel better knowing someone's being this thorough about it. Keep pushing back when places won't give you straight answers.
Patient
Yeah, that hesitation from the Phoenix center is exactly what I mean. If they won't give you the numbers, you have to ask yourself why. It doesn't necessarily mean they're bad, but transparency matters when you're making a decision this big. With pleural it's a different ball game than peritoneal, but the principle's the same - you deserve to know what you're walking into. Did your mom end up doing okay with them, or is she still trying to figure out if the choice was right?

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