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stage 3 pleural and trying to figure out which center is actually worth going to

Patient · · 53 views
So I'm sitting here looking at like three different places and I honestly have no idea what actually separates a good meso center from a mediocre one. My oncologist back here in Detroit is decent but she's basically saying I should go somewhere that does this stuff all the time and honestly that's not super helpful because I don't know what questions to even ask.

I had my EPP back in February at Michigan and it went smooth, real smooth actually, but now I'm looking at maybe needing more aggressive treatment because of some nodules they found on my follow-up scans last month and my gut is telling me I need someone who really knows what they're doing with stage 3 cases specifically.

Like what do you even look for. Number of surgeries they do per year? How long their patients actually live? Whether they do multimodal or just one thing? I've been reading about places like Mayo and MD Anderson and some specialized centers but I have no clue if those are actually better or if it's just marketing. My insurance is gonna be a nightmare either way so that's not really the limiting factor.

Did anyone else have to make this choice. What actually mattered when you were picking. Was it the surgeon's name or the team or the fact that they had all the equipment in house or what.

12 Replies

Family
Your EPP in February went smooth, that's honestly a really good sign and you should feel solid about that. But yeah, the nodule finding changes things and I get why you're feeling like you need to level up.

So from watching my dad navigate this, the real differentiator isn't the name on the hospital marquee. It's whether they're actually doing multimodal treatment as standard protocol and whether they have pulmonologists, thoracic surgeons, and medical oncologists literally in the same building who talk to each other weekly. We went to a place that checked all the boxes on paper but the thoracic surgeon was only there two days a week and the chemo team was in a different section of the hospital. It was a mess.

What actually mattered for us was asking about their last 10 stage 3 cases. How many got EPP versus pleurectomy. What was their median progression-free survival. Did they do induction chemo before surgery or adjuvant after. My dad's surgeon at his current place could literally walk me through specific patient outcomes because they track it. That's not marketing, that's just... they know their numbers because they do this constantly.

The volume question matters but not how you'd think. It's not just about doing 50 EPPs a year versus 5. It's about whether the whole tumor board is experienced with stage 3 specifically. We actually called three places and asked flat out "what's your approach to recurrent nodules post-EPP" and only one gave us a thoughtful answer that wasn't just "we'd need to see imaging." That was the place.

Good luck with this. It's exhausting but you're asking the right questions.
Patient
yeah that part about having everyone in the same building really hit home. my doc here keeps sending me emails back and forth between departments and it's like herding cats, you know? so when you say your dad's team had that all under one roof, did they actually coordinate better or was it still kinda disjointed? and I'm guessing that multimodal thing means they weren't just gonna do chemo or surgery but actually had a real plan that combined stuff?
Family
oh man this is exactly where we were back in November when Joe's oncologist said basically the same thing. I remember sitting at the kitchen table with like ten browser tabs open feeling totally lost about what actually matters.

So here's what we ended up doing. We didn't just look at names or rankings. We called three different centers and actually talked to their patient coordinators about what they'd recommend for Stage III cases that had already had EPP. And honestly that's where the real differences showed up. One place basically said "yeah we can see you" and another one wanted to do a whole tumor board review before even scheduling a consultation. That second one felt different, you know? Like they actually cared about whether they were the right fit.

What made the difference for us was finding out who does the multimodal approach regularly. Because Joe's team does surgery, chemo, and immunotherapy all coordinated together and not just thrown at you one after another. They had protocols specifically for post-EPP cases which felt important given he'd already had that surgery. We ended up at a place in Tampa that wasn't as famous as Mayo but they do like 40 mesothelioma cases a year and they've got everyone right there - the surgeons, the pulmonologists, the chemo people. No running around to different hospitals.

One oddly specific thing that actually mattered to me... when we called, I asked about their survival data and they were honest. They didn't give me some inflated number. They said most of their Stage III patients were living 18 to 24 months after diagnosis and some longer depending on how they responded to treatment. That honesty made me trust them more than the places that started throwing out impressive sounding statistics.

How far are you willing to travel if you find the right place?
Veteran
Got my pleurectomy at Norfolk Naval Medical Center back in August and those guys do this stuff constantly. That's what made the difference for me. Not fancy marketing, just volume. They had a whole team that knew exactly what they were doing at every step.

Here's what I'd push on when you call around. Ask them straight up how many mesothelioma cases they handle per year. If they're hesitating or giving you a range like "oh between 5 and 15" that's not the same as someone doing 40 or 50. Ask if they do multimodal treatment in house or if you're getting shuffled between different places for surgery and chemo and radiation. That matters because your records are gonna get lost and your care gets fragmented.

The surgeon's name is less important than the team honestly. I had a solid surgical team but what really kept things moving was the nurse coordinator and the oncology people who had worked with mesothelioma cases before. They caught stuff early during recovery that could've turned bad. Find out if they have someone dedicated to meso cases or if it's just another thoracic surgeon juggling ten different things.

One thing nobody tells you, call and ask if you can talk to one of their previous patients. Not the marketing person, an actual patient. If they won't let you do that, I'd be suspicious. We got the contact info for someone about three weeks out from my surgery and he answered like five questions that my doctors hadn't even mentioned yet.

Mayo and Anderson are solid but closer centers with real volume matter just as much. You're stage 3 so you need someone who's seen stage 3 progression and knows the aggressive stuff. That's the real separator.
Patient
Yeah that's exactly what I needed to hear. The volume thing makes sense, like a shop that does brake jobs all day versus one that does em once a month. Your message got cut off but I'm already thinking I'm gonna call around and ask that straight up instead of dancing around it. Did they give you any pushback when you asked how many cases they actually do or did they just lay it out for you?
Patient
Yeah man I get it, that's a tough spot. So after my EPP in February I was basically where you are, trying to figure out if Michigan was gonna be enough or if I needed to go somewhere bigger for the next phase. Ended up staying local but I did alot of calling around first.

Here's what I found actually matters. You want someone who does the whole package, not just surgery or just chemo. I talked to this nurse coordinator at one of the bigger centers and she said they see guys come in who had EPP somewhere and then chemo somewhere else and it's like trying to tune up a car with parts from three different manufacturers. Doesn't work right. So ask them straight up, do they handle surgery, chemo, and radiation all under one roof with the same team talking to each other.

Also call and ask how many stage 3 cases specifically they've done in the last two years. Not stage 1 and 2 mixed in. The numbers matter because stage 3 is different, your odds are different, and you want people who've seen enough of it to know the tricks. When I called Mayo back in January they could tell me right away, something like 47 stage 3 cases in 2024. That stuck with me.

The surgeon's name does matter but honestly the team matters more. You want the surgeon, the chemo doc, and the radiation person all actually talking to each other, not just polite. That's the real difference between a good center and a mediocre one. Some places the left hand doesn't know what the right hand is doing.

Good luck with this. Stage 3 is no joke but catching it early like you did gives you options.
Medical ✓ Expert Response
Your Detroit oncologist is right that volume matters, and here's the actual data behind that instinct: the IASLC (International Association for the Study of Lung Cancer) has consistently shown that centers doing fewer than 10 to 15 mesothelioma procedures annually have measurably worse outcomes, partly because the pathology reads, the surgical margins, the sequencing of treatments... it all requires a team that's seen enough cases to make fast judgment calls.

So what actually separates the centers in my experience. It's less about the surgeon's name on the door and more about whether the thoracic surgeon, medical oncologist, and radiation oncologist are in the same room looking at your scans together. That multidisciplinary tumor board is the thing I'd ask about first. Specifically ask how often they meet and whether your case would be presented before they make recommendations, not after.

On the nodules post-EPP, that's a different clinical question than the original resection. You want someone who has experience with recurrence management in EPP patients specifically, because the anatomy is changed and the options are genuinely different. We had a patient last year who'd had their surgery at a well-regarded regional center but the recurrence management was just... not there, and she ended up at Penn getting IMRT (targeted radiation) in a way her local team hadn't even discussed.

MD Anderson, Brigham and Women's, Penn, and Baylor are the names that come up most in the literature for true multimodal programs. That's not marketing, the published series back it up.

Talk to your own oncologist before making any moves, but ask her specifically: does the center you're considering have a dedicated mesothelioma program or are they a general thoracic center that sees meso occasionally. That one question tells you a lot.
2 found this helpful
Patient
I'm in a similar spot right now, just diagnosed in November with stage II peritoneal so different cancer but same headache trying to figure out where to actually go. What I've learned from doing way too much research is that the volume piece matters but it's not the whole picture.

When I was looking at centers I started asking about their multimodal approach specifically. Like do they have surgical oncology, medical oncology, and radiation all coordinated or are you bouncing between departments. I called Johns Hopkins and asked how many peritoneal cases they do per year and they told me around 40-50, then I asked what percentage get the full HIPEC protocol and they actually had that data ready. That specificity told me they track outcomes which is a good sign.

The thing that actually swayed me was talking to their nurse coordinator. She knew my staging off the top of her head after I described it, didn't have to look it up, and could tell me exactly what their protocol would be for someone at my stage. That's not marketing, that's just someone who's seen enough cases that yours doesn't feel like a puzzle.

For stage 3 pleural you're probably looking at EPP or maybe pleurectomy followed by chemotherapy and radiation depending on what the team recommends. I'd ask specifically about their recurrence rates at 2 years and 5 years if you can get them, and whether they do neoadjuvant chemo before surgery or after. The order actually matters for outcomes and not all centers do it the same way.

Mayo and MD Anderson aren't just names, they do see massive volume, but smaller specialized centers sometimes have just as good outcomes because they're laser focused. I'd honestly ask for patient references if you can get them. Hearing from someone who actually went through it at that center beats any brochure.
Patient
Yeah the multimodal thing is exactly what my oncologist kept hinting at but wouldn't spell out. So when you called around asking about that, did they actually give you straight answers or did you have to kinda figure it out by talking to multiple people? I'm wondering if some of these places are better at coordinating stuff on paper than they actually are in practice, you know?
Family
Joe went through this exact same decision making process back in September when we got his diagnosis, and honestly it was one of the most stressful parts because you're trying to make this huge call when your brain is basically scrambled. We ended up at a place that does immunotherapy alongside surgery follow-ups and that's been really important for us.

What mattered most to us was finding people who actually talk to each other. Like the surgeon, the pulmonologist, the oncologist, they all had to be in the same building or at least actually communicating. We had one consult somewhere where the oncologist basically didn't know what the surgeon had even said about Joe's specific nodule locations and we just felt like... okay, that's not it. So we asked point blank at our next place "how often do your team members sit down together to discuss cases" and we could tell the difference immediately in how they answered.

The other thing I'd push back on a little is just focusing on surgery numbers. Yes you want people who do this regularly but what we found more helpful was asking how many stage 3 cases specifically they've treated in the last two years and what their approach is to sequencing. Like are they surgery first or chemo first or some combination. Because that actually varies a lot and you want people who have a real opinion about YOUR situation not just a one-size-fits-all protocol.

When Joe started his immunotherapy in November we actually called back to ask about clinical trials and the fact that they could answer our questions immediately without having to transfer us around... that felt like we'd picked right. Might not be the answer you're looking for but that's what actually made the difference for us.
Family
Joe went through something similar back in November when we were trying to figure out where to do his immunotherapy after the initial surgery. We ended up at Moffitt Cancer Center here in Tampa and honestly the thing that made the biggest difference wasn't the fancy name on the letterhead, it was that they had a dedicated mesothelioma team that actually talks to each other. Like his surgeon, the medical oncologist, the pulmonologist, they were all in the same building and they'd already seen cases like his before.

What I'd say from our experience is ask them straight up how many stage 3 pleural cases they've treated in the last year and specifically what their protocol is for nodules after surgery. We asked for survival data but honestly those numbers can be tricky to compare because every case is different and how they measure things varies. What mattered more to me was whether they seemed to have a plan or if they were kind of making it up as they went.

One oddly specific thing that helped us was calling and asking if they had a patient advocate or someone who could walk us through the treatment plan before we committed. Moffitt had this woman named Carol who spent like 45 minutes on the phone with us explaining what multimodal meant in Joe's specific situation. That's when I knew they actually dealt with this stuff regularly because she didn't have to think about her answers.

Your gut about needing someone who really knows stage 3 is right. The surgery going smooth is great but you're looking at a different ballgame now. Have you asked your oncologist if she has colleagues at any of those bigger centers she could call to help coordinate?
Patient
yeah that part about everyone being in the same building really hits home. my surgeon here was great but getting info from oncology was like pulling teeth, they're in different departments and honestly I don't think they were even looking at the same scans. So you're saying Moffitt had that all coordinated? that's exactly what I'm worried about with some of these bigger places, you'd think they'd have it figured out but sometimes it feels like you're just a case number bouncing around. How's Joe doing now with the immunotherapy side of things?

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