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

Veteran · · 16 views
So I'm stage II pleural and my oncologist at UC San Diego is good but I'm trying to figure out if I should get a second opinion somewhere else or just stick with what I got. The thing is, there's maybe five or six places in the country that actually do meso surgery and chemo protocols regularly and everyone talks about them like they're all the same.

They're not.

What I learned going through this since October is you want to know three things that nobody really talks about. First is how many meso cases do they actually do per year. Not lung cancer, not general thoracic. Meso. I called UC San Diego and they told me straight up they do around 15-20 a year, which is solid. Some places say they do thoracic surgery and you call and find out they've done three meso cases total.

Second thing is whether they do multimodal treatment, which means surgery plus chemo plus sometimes radiation. That matters because meso doesn't respond well to any one thing alone. If a center is trying to sell you just chemo or just surgery, that's a red flag. My team here does EPP which is extrapleural pneumonectomy, induction chemo before surgery, then adjuvant chemo after. That's the protocol that's actually shown survival benefit.

Third is whether they have an active clinical trial you can get into. TTFields is the new thing everyone's talking about for stage II and some centers have it available and some don't. I'm looking at it right now because my surgeon thinks it could help my prognosis and if you're at a center that doesn't have access to trials you're basically stuck with standard protocol. That matters.

Don't let the name fool you. National center for this, comprehensive cancer that. Call them. Ask how many meso patients they saw last year. Ask what their staging and treatment protocol looks like. Ask if they have open trials. My VA claim is still pending from November and won't help with out of pocket costs anyway, so pick based on what they actually do with meso, not the hospital's reputation for everything else.

7 Replies

Patient
This is exactly the kind of practical breakdown I needed to see laid out like this. I've been doing similar due diligence since my diagnosis in November and it's striking how much variation there is once you actually dig into the specifics.

I'm stage II peritoneal, not pleural like you, but the multimodal piece resonates completely. My surgical oncologist at Cleveland Clinic is recommending cytoreductive surgery followed by hyperthermic intraperitoneal chemotherapy (HIPEC), and then systemic chemo after that. When I first started researching I found maybe three centers in the country that actually do HIPEC regularly for peritoneal meso, and one of them told me they'd only done seven cases. Seven. That's not enough volume to trust your technical outcomes to.

The clinical trial access point is something I'm actively looking at right now too. There's a phase II trial for bevacizumab in combination with first-line chemotherapy that's available at Cleveland Clinic but wasn't available at two other places I called. That's the kind of detail that changes everything and nobody mentions it in the initial consultation.

One thing I'd add based on my research: ask them specifically about their recurrence rates and median overall survival for your stage. Not general thoracic cancer data. Ask for meso-specific outcomes. Some centers will give you that, some will hedge. The ones that hedge usually don't track it carefully, which tells you something.

I'm keeping a detailed journal of every conversation I have with treatment teams, including dates and exactly what they said about case volume and protocols. Might sound obsessive but it's the only way to compare apples to apples when you're making a decision this big.
Medical ✓ Expert Response
Everything you laid out here is exactly right, and I wish more patients came in with this level of clarity about what questions to ask.

The volume point is the one I'd really emphasize. There's solid data behind it, the Batirel study out of Turkey showed meaningful survival differences when procedures like EPP are done at centers doing more than 10-15 annually versus lower volume settings. It's not that surgeons at smaller centers are less skilled, it's that the perioperative (meaning the whole before, during, and after surgical period) team coordination matters enormously for meso. Your anesthesiologist, your ICU team, your pulmonary rehab nurses, they all need to have seen this before.

On TTFields specifically, the STELLAR trial reported median overall survival of 18.2 months in pleural meso patients using it alongside chemo, which got a lot of attention. Whether it's right for your staging and your specific histology (the cell type of your tumor, which matters a lot here) is something your oncologist really needs to weigh in on, so please loop them in before making any decisions about seeking a trial elsewhere.

One thing I'd add to your three criteria is asking specifically who reviews cases at their tumor board. At the center I did a rotation through in Boston in 2019, every single meso case went to a weekly multidisciplinary board with thoracic surgery, radiation, medical oncology, and pathology all in the same room. Not every institution does that. And honestly, that room is where a lot of the real decisions get made.

UC San Diego at those case volumes is not a place I'd dismiss lightly.
3 found this helpful
Veteran
Got some good intel here. You're asking the right questions and honestly most guys don't do this homework. They just go where their doc points them and hope for the best.

I'm at UC San Diego too actually, same surgeon. Did my EPP in December and went through the whole induction chemo before that. The 15-20 cases a year thing is real, I verified it myself when I was deciding. What they didn't tell me upfront is they rotate through different protocols depending on the research they're running, so when you call ask what they're currently enrolling in. I got lucky timing-wise, my team was running a study on post-op imaging intervals and it basically meant more follow-up scans but no extra cost to me.

The multimodal thing is non-negotiable. Anybody trying to sell you one treatment is selling you short. I talked to a place in Houston that wanted just chemo and I walked. Surgery alone doesn't cut it either. You need the combo.

TTFields is interesting. My surgeon mentioned it too but said the data on stage II is still pretty preliminary compared to stage III. That doesn't mean don't do it if you can access it, just means go in knowing you're also contributing to figuring out if it works. Some guys see real benefit, some don't. You're going to be in clinical trial territory either way at this point so might as well pick one that makes sense for your staging.

The VA claim thing is frustrating as hell. I filed mine in November too and still nothing. Don't count on that money for treatment decisions. UC San Diego will work with you on costs if the VA is dragging their feet, at least they did for me.

Stick with San Diego if you trust your surgeon. Don't chase names. You already got one of the places that actually knows what they're doing.
Patient
One thing I'd add that nobody mentions - call and ask who's actually doing your surgery. I did that at UC San Diego back in February before my EPP and found out there's a difference between "the center does EPP" and "Dr. X does EPP and he's there three days a week." Turns out my surgeon had done like 80 of these things, which made me feel a lot better than just knowing the hospital had done 15-20 total. Also ask about their complication rates if they'll tell you. Mine gave me straight numbers on infection and recurrence and I appreciated the honesty instead of the usual corporate runaround. Second opinions are free, the tune-up I got this year wasn't cheap, and knowing I had the right guy under the knife made all the difference in my head going in.
Veteran
Yeah that's a huge point I didn't drill into enough. The surgeon matters way more than the center name does. I should've asked that before my December surgery but honestly I was just relieved to have someone willing to operate. Glad you got those complication rates though, that's the kind of intel most places won't volunteer. Did yours give you anything on recurrence rates or just the surgical complications?
Medical ✓ Expert Response
Everything you said about volume is backed up by data. The Brigham and Women's experience published in the Annals of Thoracic Surgery showed pretty clearly that centers doing fewer than 10 meso cases a year had significantly worse outcomes even when the surgeons were technically skilled. So your instinct to call and ask is exactly right.

On TTFields, the STELLAR trial results are worth knowing about. The median overall survival in that study was 18.2 months for pleural meso patients who combined TTFields with chemo, which was meaningful compared to historical controls. That's why your surgeon is excited. But the honest caveat is that we're still waiting on randomized controlled trial data to really confirm it, so where a center sits on that spectrum matters.

One thing I'd add to your three criteria. Ask specifically who runs their multidisciplinary tumor board and how often it meets. At a good meso center it's weekly and the same core team shows up every time, thoracic surgery, medical oncology, radiation oncology, pulmonology. I've sat in on boards at institutions that do maybe one meso case a month and the difference in depth of discussion is... significant.

UCSD isn't a bad place to be, honestly. But getting a second opinion at a higher-volume center, even just a one-time consultation, can sometimes surface options that aren't obvious from inside one institution's protocols. Talk to your oncologist about that, they shouldn't be threatened by it and the good ones never are.
1 found this helpful
Veteran
Yeah I appreciate you backing that up with the actual data. I haven't seen that Brigham study yet but that tracks with what my surgeon said - technique matters but you can't fix low volume. The STELLAR trial is exactly what I'm trying to get into right now, my team thinks the 18.2 months could be better for me since I caught this earlier. Did you see any data on how much TTFields actually adds on top of multimodal, or is it still too early to tell?

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