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picking a treatment center for meso - what actually mattered to us

Patient · · 3,621 views
So I had my EPP back in February at Karmanos in Detroit and I gotta say, picking the place was scarier than I thought it'd be. Stage I pleural, caught it early which I'm grateful for but that meant I had options and honestly too many options felt worse than none.

Here's what we actually looked at. First thing, did they do EPP or VATS regularly, not like once a year. I called three places and asked straight up how many procedures they do in a month. Karmanos was doing them pretty regular, like 8-12 a month depending. That mattered to me because I didn't want to be somebody's practice dummy, you know.

Second thing was whether they had a pulmonologist, a surgeon, and an oncologist who actually talked to each other. Not just three separate offices. My surgeon knew exactly what my oncologist was planning for chemo after surgery because they had tumor boards or whatever they call it. That made the whole thing feel less like getting shuffled around.

Third, and I can't stress this enough, ask about their post-op protocol. How often are you coming back for imaging. What's their complication rate for infection or fluid buildup. My place had me in for chest x-rays every two weeks the first two months. Some centers space it out more and that might be fine but I wanted the closer watching early on, especially since I work with my hands and didn't want to mess something up not knowing.

Also talk to other patients if you can. I got on here, asked around, and talked to two guys who'd been through EPP. That's worth more than any marketing material. One of them told me Karmanos was good but also told me the recovery sucked for him the first month and to expect that, which helped my head get ready for it.

Last thing, your insurance. Call them first. Make sure the center is in network because that bill is gonna be ugly and you don't want surprises. I almost went somewhere else until I checked and found out it was out of network. That would've cost me different.

I'm three months post-op now and doing alright. Still getting the tune-up scheduled but the surgery part went smoother than expected and I think picking a place that knew what they were doing made a real difference.

10 Replies

Patient
Asked my oncologist about HIPEC centers around Cleveland and got three names, so I'm gonna start calling around asking exactly what you did about procedure volume and whether they actually have tumor boards. Really appreciate you laying this out because I'm still in the research phase and that post-op protocol question is one I wouldn't have even known to ask.
Patient
yeah man, karmanos was solid for me too back in feb. good call asking about the complication rates, that's the stuff nobody thinks to ask until after.
Family
Oh man, this is so helpful to read right now. My mom's at Stage III so surgery isn't on the table for her but we're still trying to figure out where to do her treatment and honestly it's been paralyzing. There are like three major cancer centers in Phoenix and I've just been staring at websites not knowing what actually matters versus what's just fancy marketing.

The thing about the tumor board really got me though. That's exactly what I'm gonna ask about when I call around. Like does everyone actually know what everyone else is doing or are we just shuffling her between appointments where nobody talks to each other. I teach third grade and I know how bad communication gets when people aren't on the same page, so I can't imagine that with something this serious.

And yeah the post-op stuff makes sense. I'm gonna ask straight up about their complication rates and what the follow-up schedule actually looks like. One of my coworkers had her dad at a center that only did imaging every month and honestly I'd be a wreck with that much time between check-ins when something could go wrong.

The insurance thing though. Ugh. I'm already dreading that conversation. We're gonna have to call before we commit to anywhere and that feels like such an adult problem to have on top of everything else, you know? Like mom's dealing with this diagnosis and I'm over here playing phone tag with insurance companies.

Congrats on being three months out and doing okay. That's really good to hear and I'm glad picking the right place paid off for you. This post made me feel a little less lost about what to actually ask them.
Family
This is so helpful to read. My dad's situation is different (he's palliative now, Stage IV, we're way past surgery) but we went through something similar with the initial treatment planning back in March and honestly the paralysis of too many options was real. We ended up at Northwestern for his initial workup and one thing that stuck with me was exactly what you said about the tumor board. His thoracic surgeon actually sat down with his oncologist before we even made decisions and that conversation shaped everything that came after.

What you said about complication rates and post-op protocol hits different for me now. We didn't ask as much about that early on because we were so focused on staging and survival stats, but when he started having recurrent pleural effusions a few months in I realized we should've dug deeper into how often that happens at different centers and what their drainage protocols looked like. Knowing what to watch for and having a team that's seen it a hundred times before is everything.

The patient conversations thing is so real too. I'm a nurse practitioner so I have some medical literacy but that almost made it worse because I was googling survival curves at 2am instead of just asking people what it actually felt like. We connected with someone on here who'd been through similar staging and their experience was way more valuable than any literature I pulled.

One thing I'd add if anyone's reading this: ask about palliative care involvement early, even if you're going for curative intent. We didn't until later and I wish we had that support team in the room from the beginning. Not because things went wrong but because they think about quality of life alongside the aggressive stuff and that balance matters.

You're three months out and doing well, that's huge. Recovery is its own thing but sounds like you picked a place that set you up right.
Patient
Yeah, the tumor board thing really does change how it all feels. Sorry to hear your dad's in palliative now, that's rough. But honestly sounds like you got him in front of the right people early on, and that matters whether you're going the surgery route or not. At least he had them talking to each other instead of you being the messenger between offices, you know? That's half the battle right there.
Medical ✓ Expert Response
This is such a thorough and generous post, and three months out from EPP is a real milestone. The volume question you mentioned, asking how many procedures per month, is something I wish more patients thought to ask. There's actually research going back to the early 2000s showing that surgical outcomes for complex thoracic procedures correlate pretty directly with center volume. Not just surgeon experience but the whole team, the OR nurses, the post-op floor staff. They've seen the complications before and they don't panic.

The tumor board piece matters so much. I've sat in on those meetings and honestly it changes the whole picture when the surgeon and oncologist are arguing about your case in real time instead of sending fax notes back and forth.

The thing about talking to other patients... that's probably the most underused tool out there. I sometimes facilitate a monthly group in Ann Arbor, third Tuesday, and the information that gets shared in those two hours is just different from what any clinic can offer. Practical stuff. Emotional stuff. The guy who warned you about the first month recovery, that's the kind of thing that actually prepares your nervous system, not just your calendar.

If the emotional weight of all this ever starts feeling heavier than you can sort through on your own, please don't wait on that. Talking to a counselor who works specifically in oncology settings can make a real difference, and most major cancer centers have one on staff now.
3 found this helpful
Veteran
Good post. This stuff matters and most guys don't think about it until they're already committed to a place. I'm stage II so different ballgame than you but I'm dealing with the same decision right now, couple months out from surgery.

The volume question you brought up is exactly what my oncologist told me to ask. I called around too and yeah, there's a huge difference. Some places are like "oh we do maybe two, three a year" and that's not the answer you want to hear when they're cutting into your chest. Found one outfit doing 10-15 monthly and another doing maybe four. No brainer which one I'm going with.

The tumor board thing resonates because I've already seen what happens when doctors don't communicate. My VA pulmonologist and my civilian surgeon weren't on the same page about timing and it caused me to wait an extra month before getting the ball rolling. That's time you don't have with this. So yeah, I'm asking point blank if they actually coordinate or if it's just three separate appointments.

Post-op protocol is something I'm gonna drill down on hard. Two weeks imaging sounds tight but honestly I'd rather have them looking at me close than finding out something's wrong because nobody was watching. I'm still working part time, nothing heavy, but I need to know what I can and can't do without blowing something open.

One thing I'll add since I've been riding the VA claim process since November, make sure wherever you go they understand how to document everything for disability rating. Not all centers are dialed in on that and it'll make your claim take longer. Ask them straight up if they've worked with VA claims before.

You picked good. Three months out and feeling solid is exactly what you want to hear.
Patient
Yeah man, two or three a year is rough. You want somebody who's doing this stuff regularly enough that it's muscle memory for them, you know? Stage II is definitely different but same idea applies - you want the team that knows the playbook.

Since you're a couple months out, have you checked with your insurance yet? That's the thing nobody wants to do but it'll save you headaches later. And if you get a chance, try to talk to someone who's been through it at whatever place you're leaning toward. Made a huge difference for me just knowing what to expect.
Medical ✓ Expert Response
Really good thread. One thing I'd add that nobody's mentioned yet, and it's something I've seen matter a lot clinically, is whether the center is actively enrolling in trials. The SMART trial (Surgery for Mesothelioma After Radiation Therapy) out of Princess Margaret changed how some centers sequence treatment, and patients at high-volume academic centers often got access to that protocol before it was widely adopted. So when you're calling around asking about volume, also ask what trials they're currently enrolling. A center doing 10 EPPs a month but not connected to any research network is still a good center, but one doing 10 EPPs a month AND running a Phase II is a different conversation.

Talk to your own oncologist about what's available at the centers you're considering. It's the kind of thing that doesn't show up on any website.
2 found this helpful
Patient
That's a really good point about the trials. I didn't even think to ask about that when I was calling around, honestly. Did you mean they're running their own trials or they're enrolling patients into ones like that SMART trial? I'm curious because my oncologist mentioned something about a study they were looking at for my chemo sequencing but I didn't dig into whether it was actually a formal trial or just how they normally do things. Karmanos is connected to Wayne State so they probably have more of that stuff going on than smaller places.

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