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picking a treatment center for meso - what actually mattered when I had to decide

Veteran · · 68 views
So I had surgery in December at Scripps here in San Diego and I'm gonna be straight with you about what matters and what doesn't when you're trying to pick where to get cut open.

First thing. You need a surgeon who does this stuff regularly. Not the guy who does meso once a year alongside his regular lung cases. I talked to three places and Scripps had a surgeon who'd done about forty of these procedures. That number stuck with me. My oncologist here said the difference between twenty a year and five a year is the difference between knowing what he's gonna find in there versus guessing.

Second. Ask them flat out what their survival numbers actually are for your stage. Not the national average. Their numbers. Their patients. Stage II pleural like mine, the places that do high volume cytoreduction plus chemo had median survival around three years versus like eighteen months at smaller centers. That's real.

Third thing that nobody talks about enough is the chemo support during recovery. After surgery you're weak and you're gonna need chemo and if your treatment center doesn't have oncology right there or close by, you're driving an hour for appointments while you're healing. That matters more than people think.

I also looked at whether they had tumor boards, meaning they actually sit down and talk about your case with multiple doctors instead of just your surgeon doing his thing alone. Scripps did that. Made me feel like they were actually thinking about me as a person not just another procedure.

The VA thing. If you're filing a claim like I am, ask if they work with VA patients and if they know how to document stuff for VA purposes. Some centers don't care about that and then your claim gets held up because documentation doesn't match what VA needs. Anyway, that's a pain I wouldn't wish on anybody.

My advice. Call five places minimum. Ask them how many procedures they do a year. Ask for survival data. Ask about chemo support on site or nearby. Ask about tumor boards. If they act annoyed that you're asking questions, that's your answer right there.

I'm four months post-op now and still dealing with recovery but the surgery itself went clean. Surgeon got everything he could see. You want that surgeon.

12 Replies

Patient
Man, this is gold. I'm gonna bookmark this because you nailed exactly what I wish somebody had laid out for me straight like this back when I was shopping around.

The surgeon volume thing really hit home. I ended up at Henry Ford here in Detroit and before I committed I asked the same question you did. Guy had done like thirty-five of these over maybe eight years so not quite your surgeon's numbers but enough that he wasn't learning on my chest, you know? When the doc told me that difference between knowing and guessing I about fell over because that's exactly how it felt when I talked to the first place that wanted to take me on.

Your point about the chemo support nearby is something I didn't weight heavy enough going in and kinda regret that. I had to do my follow-up tune-ups at a different hospital which meant coordinating with two places and my wife got real tired of that real quick. Not a dealbreaker but man would it have been nicer to have it all under one roof while I was still healing up.

One thing I'd add from my own experience in February after surgery, ask them about their complication rates too, not just survival. Doesn't do you good to know they're good at the operation if they're sloppy about infections or air leaks after. My surgeon walked me through his infection rate and his readmission numbers and honestly that mattered as much as the big survival stat.

You doing okay now four months out?
Veteran
Yeah thirty-five is solid, that's the ballpark you want. Eight years though means he's doing maybe four or five a year which is respectable but not high volume like the guys doing twenty plus annually. Still, sounds like you made the right call asking the hard questions upfront. Henry Ford's got a good reputation for this stuff from what I've heard. How far along are you now in recovery?
Family
This is exactly what I wish we'd known when Joe started looking around. We went to two places locally here in Tampa and honestly one of them felt like they were just going through the motions, you know? But when we talked to the surgeon at the bigger center, he actually asked us questions about Joe's work history and what his symptoms were like before diagnosis. That matters because he could tailor the approach.

One thing you didn't mention that I think is huge - ask them how long patients typically stay in the hospital after surgery. We were told five to seven days but Joe ended up staying eleven because of some fluid buildup. The place we chose had dealt with that before so the team knew what they were doing instead of it feeling like an emergency situation. Also they had a physical therapist come in daily which I know sounds small but getting moving again after surgery is no joke and having someone who understands post-meso recovery makes a real difference.

And honestly call the patient coordinator, not just the surgeon's office. We talked to someone named Patricia who basically told us the truth about what recovery would actually look like and didn't sugarcoat it. That kind of honesty goes a long way when you're trying to make peace with what's coming.

How far along is Joe in his treatment plan now?
Veteran
Good post, M. Appreciate you laying this out straight. I went through the same vetting process back in June when I got my diagnosis at the VA clinic here in Norfolk. Ended up at a center that does high volume and it made all the difference.

The surgeon volume thing is exactly right. My guy had done over fifty of these. First appointment he walked me through what he expected to find before he even opened me up, and he was spot on. That's experience talking. I talked to one other place where the surgeon seemed like he was reading off a script about meso procedures. Wasn't going back there.

What really got me was the chemo support piece you mentioned. After my pleurectomy in August I was running on fumes and having oncology in the same building meant I didn't have to drive nowhere while I was still moving slow. Made the whole thing manageable. Some places talk a good game but when you're six weeks post-op and need to get to treatment, that proximity matters more than anything.

One thing I'd add. Get everything in writing about what your actual out of pocket costs are gonna be. Don't assume the VA covers everything even if you're service connected. I found out late that certain imaging and follow-ups had different coverage rules and had to scramble. Ask them point blank what they bill the VA versus what they might bill you directly.

The tumor board thing sold me too. Felt like they were actually thinking about my case instead of just running through a checklist. Four months in now and doing alright. Recovery's slower than I'd like but the surgery itself went clean.
Family
Oh wow, this is so helpful. Joe's surgeon at USF Health in Tampa does about thirty cases a year, so that gives me some real perspective on what we're working with. We didn't ask half the questions you're listing here before we committed and I wish we had, honestly. That survival data point about three years versus eighteen months is exactly the kind of thing nobody just volunteers.

The tumor board thing really resonates because that's actually what convinced us to go with USF instead of somewhere closer. They sat down and explained Joe's stage III situation like they were teaching a class, not just rattling off medical stuff. One of the doctors even used to teach so we had this weird connection there. After twenty-eight years in the classroom I guess I just feel better when people actually explain their thinking instead of handing you a pamphlet.

And oh man, the chemo support on site. We learned that one the hard way. His first round of immunotherapy in November we had to drive to a satellite location forty minutes away because the main center was booked. Joe was already exhausted from the pre-treatment scans and appointments and that drive just wiped him out for the rest of the day. We made noise about it and now he gets infusions right there at the main hospital. Small thing but it makes the whole thing less brutal.

One thing I'd add since you mentioned documentation... if you're dealing with any kind of insurance stuff or filing anything, get copies of everything before you leave each appointment. Not the summaries they give you. The actual notes. We had a claim question come up and having those detailed reports saved us weeks of back and forth.

How are you feeling four months out? That's still pretty early.
Medical ✓ Expert Response
This is one of the most practical posts I've seen on this forum. Everything you wrote tracks with what the data actually shows.

The volume thing is real. The IASLC (International Association for the Study of Lung Cancer) has published on this repeatedly. Centers doing fewer than ten to fifteen cytoreductive procedures a year show measurably worse perioperative outcomes. That's not a knock on any individual surgeon, it's just what the learning curve looks like with an operation this complex.

Your point about tumor boards is something I wish more patients asked about upfront. When I was working with a multidisciplinary team in 2019 we caught a staging discrepancy in a case review that would have changed the entire treatment approach. That kind of catch doesn't happen when one doctor is making calls in isolation.

The VA documentation piece is something I honestly hadn't thought enough about before seeing it raised here. That's a gap that probably costs people real benefits because the clinical team is focused on medicine and nobody's thinking about what the claims adjudicator needs to see six months later. Worth asking your social worker specifically about that if you have one assigned.

Four months out from an EPP or P/D (pleurectomy/decortication, the two main surgical approaches for pleural meso) and already this clear-headed about the process... that's a good sign. Recovery from cytoreduction is genuinely brutal and people underestimate it.

Definitely talk to your own oncologist about any specific decisions, but the framework you laid out here is solid.
4 found this helpful
Medical ✓ Expert Response
This is one of the most practical posts I've seen on here in a long time. Everything you laid out tracks with what the research actually shows.

On the volume question specifically, the data from the International Mesothelioma Interest Group has consistently shown that surgical outcomes for EPP (extrapleural pneumonectomy) and P/D (pleurectomy/decortication) correlate strongly with center volume. The numbers you cited for median survival at high-volume cytoreduction centers are in the right ballpark. A 2021 analysis out of Memorial Sloan Kettering found similar gaps when comparing specialized centers to lower-volume programs, and it's not subtle.

The tumor board point is one I feel strongly about. When I see patients come in for second opinions and their prior center had no multidisciplinary review, sometimes the treatment sequencing is just... off. Not wrong necessarily, but not optimized. There are cases where the order of surgery versus chemo versus radiation changes everything, and that's a conversation that needs more than one voice in the room.

The VA documentation piece is something that doesn't get talked about enough in clinical settings honestly. Oncology teams at non-VA facilities sometimes don't know what language the VA actually needs in their notes, and that gap can cost someone months on a claim. Glad you flagged it.

Four months post-op with a clean resection is a good place to be. Please make sure your oncologist is tracking your CA-125 and imaging schedule closely in this window, it's when surveillance really earns its keep. Talk to your own doctor about what your specific follow-up cadence should look like given your staging.
3 found this helpful
Family
Oh man, this is so helpful. My mom's at stage III and we're literally in the middle of trying to figure out where to do her surgery. We got referred to someone here in Phoenix but I've been losing sleep over whether that's actually the right choice, you know?

Your point about the surgeon doing these regularly really hit me. I called the place here and asked how many they do and the person on the phone seemed kinda confused by the question which was... not reassuring. Then she said "oh, probably several a year" which is NOT the same as forty. So now I'm looking at places in California and maybe Texas and it's overwhelming because I'm trying to do this while also teaching fourth graders and honestly some days I can barely keep it together.

The survival numbers thing is what I'm gonna ask about next. Nobody here just volunteered that information. They were real focused on the surgery itself but when I asked about outcomes they got vague. I didn't know to ask about their specific center data versus national averages so that's gold.

And the chemo support on site thing... wow. My mom would have to drive like 45 minutes for oncology if we go with the Phoenix option. She's already so tired all the time. That sounds brutal during recovery.

I'm gonna call around this week like you said. At least five places. I'm scared of making the wrong choice but reading your post makes me feel like I'm asking the right questions at least. Thank you for being so specific about all this. It helps so much to know what actually matters instead of just feeling lost.
Medical ✓ Expert Response
This is one of the most practical posts I've seen in a long time and I just want to say, four months out from a clean resection is something to sit with for a moment.

The tumor board piece especially. In my work I've seen patients at smaller facilities where one physician is essentially making all the calls, and then they transfer to a high-volume center and the whole treatment picture shifts within a week because suddenly five specialists are looking at the same scans together. It's not dramatic, it just quietly changes everything.

The VA documentation point is so real and so overlooked. I've sat with patients in late 2023 who had solid cases and the claim process dragged out for months because the clinical notes weren't written with VA criteria in mind. Some centers have a dedicated liaison who knows exactly what language the VA needs to see. Asking that question upfront saves so much grief later.

The survival data question makes some patients nervous to ask, like they're being rude. You're not being rude. You're making a medical decision that affects your life and any center worth going to will answer it without flinching.

For anyone reading this who's earlier in the decision process and feeling overwhelmed by all of it, that feeling is completely normal and doesn't mean you're not handling it. Sometimes journaling what questions you're afraid to ask can help you figure out what you actually need to know. And if the anxiety around these decisions feels persistent, talking with an oncology social worker or counselor can help you sort through it so you can actually focus on the medical choices.

Thank you for writing this out so honestly.
3 found this helpful
Veteran
That Scripps surgeon sounds like the real deal. I'm glad you got someone who knows what he's doing because yeah, the difference between volume and part-time is night and day. My guy at Scripps is solid too, did mine in December same as you.

The VA documentation thing is huge and honestly I wish someone had told me that upfront. I filed my claim in November and it's still sitting there. The hospital sent over what they thought was complete but VA came back saying the staging wasn't documented the way they need it and the asbestos exposure timeline wasn't clear enough. Had to get Scripps to resubmit stuff in January. Wasted two months on that. Now I'm telling every vet I talk to on here, before you even schedule surgery, call the VA regional office in your area and ask what documentation they specifically need for mesothelioma claims. Get it in writing if you can. Then give that list to your treatment center. Make them understand this isn't just a medical thing for you, it's connected to your benefits.

Camp Lejeune 1978 to 82 for me, barracks with asbestos all over the insulation. Then USS Iwo Jima. Took forty years to show up but here we are. The VA needs to know exactly where and when you were exposed, so that's another thing when you're picking your center, ask if they have experience translating military service records into exposure documentation because most civilian hospitals don't think about that.

Tumor board is real important. They caught something my surgeon wanted to approach one way and the oncologist on the board pushed back. Better plan came out of it. You want that collaboration.

Four months post-op now too. How's the chemo going for you? Still in treatment or finished?
Medical ✓ Expert Response
This is one of the best practical breakdowns I've seen on this forum and the volume point deserves more emphasis. The data on surgical volume for mesothelioma is pretty striking. A 2012 analysis out of the Brigham and Women's group showed that centers doing fewer than ten EPP (extrapleural pneumonectomy) or P/D (pleurectomy/decortication) procedures annually had significantly worse perioperative outcomes, not just survival but complications during and right after surgery. Forty cases is genuinely meaningful.

The tumor board piece is something I push hard on with my own patients. When I was doing my fellowship at UCSF in 2009 we had a dedicated thoracic oncology board that met every Thursday at 7am and honestly those early morning arguments between the surgeons and the medical oncologists were where the real decisions happened. A solo surgeon making calls without that kind of pushback isn't necessarily wrong, but the odds are better with more eyes on it.

And the VA documentation thing is real. I've watched patients lose months on claims because operative reports didn't include the right language about asbestos exposure documentation or occupational history. Some centers just don't know what the VA needs and don't ask.

Four months out with a clean resection is genuinely good news. Talk to your oncologist about where you are with adjuvant therapy if you haven't already, because the post-surgical window matters.
3 found this helpful
Veteran
Yeah that Brigham study is exactly what my oncologist pulled up when we were talking through the numbers. He said the same thing about complications, not just the long-term stuff. I didn't want to get too deep in the weeds with data in my original post but that's the real meat of it. My surgeon told me straight up that at his volume he knows what complications look like before they happen, meaning he can manage them differently. That confidence matters when you're the one on the table. Thanks for backing that up with the actual research.

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