how do you actually know if a surgeon or oncologist is worth seeing for meso

Joe went through this exact thing back in September when we got his diagnosis. We ended up at a major cancer center down in Tampa that has a dedicated mesothelioma program, and honestly the difference between talking to a surgeon who sees maybe 5 meso cases a year versus someone doing 30+ was night and day.

When we did our consultations I started asking about their HIPEC protocols, how many cytoreduction surgeries they'd done in the last year, and whether they had an oncologist right there who specializes in meso rather than someone they outsource to. The surgeon we went with could talk about his specific complication rates and actually knew the literature on peritoneal cases. Like he mentioned a study from 2023 without me even bringing it up, and when I asked about survival outcomes with multimodal treatment versus surgery alone, he had actual numbers from his own patient population.

One thing that helped was asking if they've worked with patients from your exposure background. You've got that well-documented Johns-Manville history which is valuable information for them. Good surgeons want to know that because it affects staging and prognosis conversations.

We also asked about what happens if they find more disease than expected during surgery and whether they have backup plans. A surgeon who hesitates on that question or seems uncomfortable talking through scenarios probably isn't as experienced as you need.

Your symptom journal idea is brilliant by the way, sounds like your teaching background coming through. How many consultations are you planning to do before deciding?

Joe's surgeon at Moffitt in Tampa has done over 200 HIPEC procedures, and honestly that number came up a lot when we were researching. I think somewhere in the range of 30-50 cases a year is when you start seeing surgeons who really know the ins and outs of meso specifically, not just general abdominal surgery with a meso case thrown in occasionally. Less than that and you're kind of rolling the dice.

When we did our consultations we asked about their outcomes with peritoneal specifically because thoracic and peritoneal are pretty different beasts. One surgeon we talked to kept pivoting back to lung cases and we just got the sense he wasn't as deep in the peritoneal world. The surgeon we went with could talk about specific complications he'd seen and how he handles them, which felt different from someone reading off a script.

The multimodal thing matters too. We wanted someone who did the surgery and had the chemo coordinated in house or at least had a real partnership with the oncology team. Joe's oncologist and surgeon literally talk to each other, not through us playing telephone. That made a huge difference in his treatment plan when they adjusted things in November.

I'd ask them straight up how many peritoneal cases they've done in the last year, what their complication rates look like, and whether they're comfortable with aggressive cytoreduction or if they have a different philosophy. Good surgeons will give you actual numbers and won't get defensive. You sound like you're approaching this the right way with your documentation and everything. That window you have is real valuable...

Hey, I get the detective work here. So I had EPP done back in February at a place that specializes in this stuff, and honestly the difference between a surgeon who does meso all day versus someone who dabbles is huge. Like night and day.

One thing that really stood out to me was asking about their complication rates and what their actual caseload looks like. When I met with my surgeon he could rattle off his numbers without even looking anything up. He'd done like 200+ EPPs total and was doing maybe 40-50 a year. The first guy I consulted with in Detroit, nice enough dude, but when I asked how many he'd done he had to look it up and it was like 12 total. That was a big red flag for me.

For peritoneal you're probably looking at HIPEC which is a whole different animal than what I had done with pleural, but same principle applies. The surgeons who are really dialed in with meso tend to be at bigger cancer centers or places that have built out a whole program around it. They usually work with the same oncology team consistently too which matters because they all know how to talk to each other about sequencing and what comes next.

What helped me was calling and asking straight up: how many of these have you done in the last year, what's your complication rate, and do you have oncologists here who specialize in meso or am I getting shipped around. If they get defensive or vague that's your answer right there. The good ones are proud of their numbers and want you to know they're serious about it.

Cleveland's not far from some solid centers if you need to travel but sounds like you've got time to shop around which is the right move. Don't rush it.

You're asking exactly the right questions and honestly the fact that you're doing this legwork now instead of just picking someone is huge. I'm in a similar spot trying to figure out my own surgical options so I've been digging into this pretty hard.

On volume, from what I've gathered talking to other peritoneal patients and reading through some of the literature, anything under 20 cases a year is probably not where you want to be. The surgeons doing 50+ cases annually tend to have better recurrence rates and fewer complications. But here's what nobody tells you upfront: ask specifically about their peritoneal cases, not their total meso volume. A surgeon might do 30 mesothelioma procedures a year but only 5 of those are peritoneal. That matters. I called around to three different centers and got wildly different numbers when I asked that follow-up question.

The multimodal thing is real. My oncologist here in Cleveland is good at what she does but she was honest with me that if I go with a surgeon who has their own in-house chemotherapy protocols, the coordination is just different. I scheduled consultations at two places and one of them had me talking to the actual chemotherapy team that would be handling the post-HIPEC part. The other one handed me a referral form. You can feel the difference.

For thoracic versus oncologic background, I think both can work but they approach it differently. The thoracic surgeon might be more comfortable with the technical aspects of the cytoreduction itself. The surgical oncologist might have better perspective on the systemic disease piece. Ask them about their last five peritoneal cases specifically. How did those patients do. What was their approach to incomplete cytoreduction. If they seem irritated by detailed questions or vague about outcomes, that's information too.

One thing I started doing is asking for references. Not in a formal way but I'll say "do you have any patients from the last couple years who'd be willing to talk about their experience." Most places will connect you with someone. I talked to a woman who had HIPEC at a major center back in 2022 and she gave me specifics about recovery timeline and how the team managed complications that I never would've thought to ask about.

Your symptom journal habit will serve you well here. During consultations write down how they answer, not just what they say. Do they spend time understanding your specific exposure history from Johns-Manville. Do they want to see your imaging themselves or just rely on the reports. The ones who took time with my occupational history seemed to understand the disease better overall.

You're asking exactly the right questions and honestly your Stage II peritoneal with stable markers gives you time to find someone who really specializes in this rather than just occasionally does it. I'd push hard on asking about their complete multimodal protocol in house and their individual case volume over the last 5 years, not just annual numbers, because that tells you if they're actively doing this versus dabbling.

yeah this is smart thinking. mine was pleural not peritoneal but I learned real quick that volume matters a ton. when I was looking around after my diagnosis last December I found out my local surgeon had done like 3 mesotheliomas total in the last 5 years. that's not gonna cut it for something this specialized.

the guys worth seeing are typically doing 20-30 cases a year minimum, and they've usually got their whole team in one place. when I went to see the surgeon who ended up doing my EPP in February, they had the oncology team right there, the pulmonologist, the pathologist, all under one roof. they weren't gonna send me off somewhere else for chemo. that matters because they know exactly how the surgery affects your recovery and can time everything right instead of you bouncing around between hospitals.

ask them straight up how many meso cases they've done in the last two years. not lifetime, last two years. and ask what their recurrence rates look like and what their complication rates are. most good surgeons have that data ready because they track it. if they seem annoyed by the question or don't have an answer, that's your sign to keep looking.

the specialty thing you mentioned, yeah that does matter. you want someone whose main focus IS mesothelioma or at least thoracic oncology, not just a general thoracic surgeon who happens to do it sometimes. it's like the difference between a mechanic who specializes in carburetors versus one who just knows a little bit about them because he's been around cars.

Cleveland's not far from some solid centers so you've got options. don't feel bad traveling if the surgeon's track record is way better. I'm glad your tumor markers are stable because that gives you time to really vet these people instead of rushing.