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picking a treatment center - what actually matters when youre deciding between places

Veteran · · 50 views
So I had to pick fast after diagnosis in June. VA screened me, found it, and by August I was in the OR. But before that I looked at a few places and honestly most of the marketing stuff is noise.

What actually matters: how many meso cases do they do per year. Not hundreds, I mean actual mesothelioma cases. The places that do ten, fifteen a year versus the ones doing one or two. That's the difference between a surgeon who knows the anatomy cold and one who's reading the textbook the night before.

Second thing is whether they do multimodal treatment on site. Pleurectomy, chemo, the whole thing. I didn't want to get bounced between three different hospitals because that's three different teams and nobody's talking to each other.

Third is where their surgeons trained and how long they've been doing meso specifically. My guy was at MD Anderson for years before he came to the VA facility here in Norfolk. That matters more than the hospital's marketing budget.

Don't get caught up in amenities or how nice the waiting room is. Ask them straight up: how many meso surgeries last year. What's your five year survival rate. Can I talk to someone who had the same stage and surgery I'm looking at. If they won't answer those questions directly, walk.

I got lucky with timing and location but yeah the metrics that matter are simple. Case volume, multimodal capability, surgeon experience. Everything else is secondary.

11 Replies

Veteran
This is solid advice and I'm glad you nailed it with your surgeon. Case volume is everything, man. I went through the same screening process with the VA here in San Diego and ended up at Scripps for my pleurectomy in December because they were doing actual meso cases, not treating it like some rare zebra diagnosis.

The multimodal thing you mentioned is critical. I watched a buddy get shipped around to three different places for his surgery, chemo, and follow-up scans. Nobody had his full picture. By the time his second oncologist got up to speed it was already February and time was burning. My team at Scripps coordinated everything on one campus so the surgeons and oncologists were literally talking in the hallway between my appointments.

One thing I'd add though: push hard on the VA claim process while you're picking your center. I filed mine in November right after diagnosis and I'm still waiting for rating determination. Some facilities have VA liaisons who know how to navigate the paperwork faster than others. Ask if they have someone who handles meso cases specifically because the standard VA claims reps don't always know this diagnosis gets expedited.

Your point about five year survival rates is important but also ask them what percentage of their Stage II/III patients actually get multimodal treatment. Some places quote survival numbers for patients who got surgery plus chemo plus radiation, but then they only actually do surgery. That's marketing BS.
Veteran
You nailed it. When I got my diagnosis in October I went through the same thing, except I'm out here in San Diego so the VA options are different. Called around, got the same marketing spiel from everywhere. One place kept talking about their "state of the art facilities" like that's gonna change the fact that they do maybe two meso cases a year.

Found a surgeon at the VA hospital here who's done over 300 of these things. Not exaggerating, I looked it up. Guy trained at Sloan Kettering, spent years there before coming back. When I asked him point blank what his outcomes were he just pulled up the data without hesitation. That's when I knew I was in the right place.

Had my pleurectomy in December and they did the chemo follow-up at the same facility. No shuffling around, no repeating scans because nobody had the files. Same team knew exactly what they were looking at. That continuity is real and it matters.

The other thing I'd add is push hard on the VA claim process if you're military. Mine's still sitting there since November but having the mesothelioma documented at a solid facility with actual case volume makes the VA take it seriously. They see Camp Lejeune on my records from 78 to 82 and suddenly things move faster. Well, not fast, but you know what I mean.

Your point about talking to other patients is gold. Ask them for names. If the center won't connect you with someone who had the same stage and surgery, that's a red flag the size of a parade ground.
Veteran
Got diagnosed October so I'm still pretty fresh into this thing but I completely agree on the case volume part. When I was getting my initial workup at the VA facility here in San Diego, the thoracic surgeon told me straight up he does maybe two, three meso cases a year. That was a red flag so we looked at some other options and ended up at a civilian center that does way more volume. Makes a difference. You can tell when someone's done the surgery a hundred times versus ten times, it's in how they talk about what to expect.

The multimodal thing saved us headaches too. We did the pleurectomy in December, started chemo right after at the same place, no shuffling around to different hospitals. Surgeon was there the whole time seeing how I was tolerating things and adjusting the plan. Can't imagine doing surgery at one place and then chemo somewhere else where they don't know what your baseline was before the knife.

One thing I'd add is ask them about their follow-up protocol. Like how often you're seeing the surgical team after treatment, what imaging schedule looks like, who you call if something feels wrong at 2 AM. We got that spelled out before I went under which took some stress off.

VA claim is still sitting in limbo from November but that's a different beast. The treatment itself though, you're right. Don't care about the coffee in the waiting room. Care about how many times that surgeon has been inside a chest cavity like mine.
Veteran
Yeah W., that's exactly right. You caught it early enough to shop around, that's smart. The difference shows up in everything - how they position you, how they talk through the anatomy with you pre-op, how calm they are in that first consult. Surgeon who's done it a hundred times doesn't need to prove anything, he just walks you through it like he's done it a hundred times.

Sounds like you made the right call bailing on the VA option there. Good luck with the civilian center.
Veteran
You nailed this. Case volume is everything and nobody wants to say it out loud because it sounds cold but it's the truth. We did a site visit to two places before my surgery in December and one facility told us they do "several cases a year" which turned out to be four. Four. The other one had their numbers right there, twelve to fifteen mesothelioma cases annually, and yeah that's where I ended up.

The multimodal thing saved me from getting jerked around. I had the pleurectomy at the VA facility in San Diego, chemo lined up at the same place, same team knows my file. My buddy from Lejeune went to a place that did the surgery but shipped him out for chemo and it was a nightmare coordinating records, different oncologists arguing about dosing.

One thing I'd add that nobody mentions is ask them straight up about their complication rates and what happens if something goes sideways. My surgeon told me flat out what his reoperation rate was, what his infection rate looked like compared to national data. That's when you know someone's confident in their work. If they dance around it or get defensive, that tells you something too.

VA claim is still sitting in limbo over here but at least the medical side was squared away fast. The surgeons matter more than anything else on that list. Experience compounds. You want someone who's done this enough that it's muscle memory, not a special case.
Veteran
Yeah, four cases a year is basically a learning center for your surgery. That's exactly what I was trying to flag. Twelve to fifteen puts you with people who've seen the complications, know how to handle the tough spots. Glad you pushed back on that first place and got the numbers straight.
Attorney ✓ Expert Response
This is solid advice and I'd add one thing from the legal side that intersects with what you're describing. In asbestos litigation we pull medical records from dozens of treatment centers, and the documentation quality at high-volume meso programs is genuinely different. The tumor board notes, the staging workup, the surgical reports... they're more thorough, more specific, and that matters if a claim ever gets filed. I've seen cases where thin medical records from a lower-volume facility made it harder to establish disease progression and causation, even when the underlying facts were strong.

The VA connection you mentioned is worth flagging for others here too. Veterans diagnosed through the VA may have access to specialized oncology programs that coordinate with outside centers, and the VA's asbestos exposure records can be valuable documentation for a legal claim down the road. The Veterans Benefits Administration and a civil tort claim are separate tracks and you can potentially pursue both, though the rules vary by state and situation.

Your point about asking hard questions directly is exactly right. A program doing 40 to 50 meso cases a year at a place like Houston or Boston has a fundamentally different level of institutional knowledge than one doing 3 or 4. The published literature on volume-outcome relationships in complex thoracic surgery is pretty clear on this.

As always, consult an attorney for your specific situation, especially regarding the VA benefits and civil claim intersection.
3 found this helpful
Veteran
Yeah that's a good point, M.S. Didn't think about it from that angle but makes sense. The places doing this work constantly would have their documentation dialed in. I'll be honest, I didn't know at the time that my medical records might matter for anything beyond my own treatment, but that's useful information for guys coming up behind me. So when someone's vetting a treatment center they're basically killing two birds, getting better care AND better documentation if they need it down the road.
Medical ✓ Expert Response
This is genuinely one of the most useful posts I've seen on here in a long time. Everything you said tracks with what I've watched families go through over 12 years of oncology social work.

The case volume piece especially. There's research out of Memorial Sloan Kettering from around 2018 showing that surgical outcomes for pleural mesothelioma correlate strongly with institutional volume, and the cutoff they kept coming back to was roughly 10+ cases per year. Below that and the complication rates start climbing noticeably. You lived that instinct before you ever read a study.

The coordination piece is huge and honestly underappreciated. I've sat with families who were driving 45 minutes each way between a surgery center and an oncology clinic because nobody thought to ask upfront whether the team actually talks to each other. The emotional and logistical toll of that... it adds up fast in ways that affect treatment compliance and just basic quality of life.

One thing I'd add from the support side, and you kind of touched on this with the "talk to a patient" piece, is that most high-volume centers have patient navigators or social workers embedded in the meso program specifically. If a center can't connect you with peer support within a week of your first consult, that tells you something about how integrated their whole-person care actually is.

For anyone reading this who's still in the deciding phase and feeling overwhelmed, connecting with a counselor familiar with oncology can help you organize what questions to even bring to those appointments. The cognitive load of a new diagnosis makes it hard to think straight, and that's completely normal.

Glad your timing worked out. Norfolk VA has a solid reputation for exactly the reasons you described.
3 found this helpful
Veteran
Yeah that matches what I saw when I was doing my homework, A. The MSK data was part of what pushed me to ask the hard questions. When you're talking about cutting into your chest cavity, that experience gap isn't theoretical, it's real. My surgeon had done hundreds by the time he got to me. That's not luck, that's the whole ballgame.
Veteran
You nailed it M. I did basically the same thing back in June when they dropped the diagnosis. VA called me in for routine screening and boom, there it was. I had maybe two weeks to figure out where to go and honestly the noise was deafening.

The case volume thing is real. I asked my surgeon point blank how many pleurectomies he'd done and he said 47 in the last three years. That's the kind of number that lets you sleep at night before surgery. Some places I called couldn't even tell me without going to pull records. Red flag right there.

What sold me on the Norfolk VA facility wasn't the building, it was that they had oncology, thoracic surgery, and pulmonology all in the same system. No driving around to three different places for followups. My pleurectomy was August 12th and I was back in chemo within six weeks because everyone was literally on the same page. That coordination matters more than people think.

The surgeon training thing checks out too. Mine spent time at MD Anderson doing exactly this work before he came here. You can tell when someone's done the same operation hundreds of times versus someone who's competent but still learning the fine points. The difference is in how calm they are in the OR, how they handle complications if they come up.

Ask the hard questions. Five year survival. Complication rates. Whether you can talk to previous patients. The places that hesitate or give you marketing speak instead of data... keep looking. You're making the biggest decision of your life, not picking a hotel.

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