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VA hospital vs private center for pleural meso stage II - what actually made the difference for me

Veteran · · 2,916 views
Got my surgery done at Scripps in San Diego back in December after being diagnosed in October. Spent weeks trying to figure out where to go and honestly the metrics everyone talks about online don't tell you what actually matters.

Here's what I learned. First thing, ask how many pleural cases they do a year, not just meso in general. Scripps was doing 40-50 a year. That's different from a place doing 5 and calling themselves experienced. Second, find out who your surgeon actually is, not just the center name. My guy was Dr. Richardson, trained at Memorial Sloan Kettering, does this every week. That matters more than the hospital's logo.

Third thing nobody mentions is the follow-up imaging protocol. After surgery you're gonna need CT scans every 8-12 weeks for the first year. Ask them upfront how that works, where you get scanned, do they have their own radiology or are you driving around. I'm in San Diego so Scripps made sense for that reason too.

Fourth, ask about their chemo coordination. Most places will do surgery then send you back to your oncologist for chemo. Some centers have oncologists on staff who know exactly what just happened to your lungs. That's better. They know the surgical approach, the extent of what was removed, the scar tissue you're dealing with.

Fifth, talk to their nurse navigator before you commit. Mine was named Patricia, called me the day after surgery, called me every week during chemo, knew my scan results before I did. That person saves your life in the middle of the night when you're panicking about a weird pain.

I also looked at the VA because of my Camp Lejeune exposure from 1978-1982. VA has good facilities but the wait times killed me. Filed my VA claim in November, still waiting. If I'd waited for them to approve treatment I'd be further along in the disease. Private center got me in within two weeks of diagnosis.

Last thing, ask about clinical trials. Good centers will have options. Bad ones won't even mention them. Scripps had three different trials I could've done. Didn't do one because my stage and imaging didn't fit, but knowing they had them told me they're staying current.

Don't pick based on rankings or what some website says. Pick based on surgeon experience, volume, your follow-up logistics, and their chemo team. That's it.

10 Replies

Patient
This is incredibly helpful, thank you for breaking it down like this. I'm in the middle of evaluating HIPEC surgery centers right now and a lot of what you said is making me reconsider my initial shortlist.

The surgeon volume question is one I hadn't asked directly. I've been looking at overall meso cases but you're right, pleural vs peritoneal is completely different. I have peritoneal so I need to flip this around and ask specifically how many peritoneal debulkings they do annually, not just general meso numbers. I'm guessing that's a much smaller number at most centers.

Your point about the follow-up imaging protocol hit home because I just realized I haven't even asked where I'd get my scans done post-op. I'm in Cleveland so logistically that matters for me too. I keep a symptom journal and I'm neurotic about tracking my imaging every few months anyway, so knowing the actual process upfront would help me plan around work.

The VA thing resonates with me since I was exposed at Johns-Manville back in 1978 to 1985, though my case went through private insurance first. But the wait time issue you're describing is exactly why I'm not banking on VA for primary treatment. I filed my claim anyway but you can't afford to wait when you're stage II.

One question if you don't mind, did Dr. Richardson discuss any specific advantages of the surgical approach he used versus other techniques you researched? I'm trying to understand if there are meaningful differences in how different surgeons approach peritoneal cases or if volume and experience are really the main differentiators.
Veteran
Yeah, exactly. That peritoneal piece is huge because the surgical approach is totally different from what I went through. Same thing applies though, ask them point blank how many HIPEC cases they do a year and who specifically does your surgery. Don't let them give you the "our team" answer. You want to know if it's the same surgeon every time or if you're getting rotated around. Good luck with your shortlist.
Medical ✓ Expert Response
Patricia, the HIPEC evaluation adds another layer because you're looking for centers where the surgical oncologist and the perfusionist (the person who actually runs the heated chemo circulation during the procedure) have done those cases together repeatedly, not just high individual numbers. The PRODIGE 7 trial data from 2018 honestly changed how a lot of us think about HIPEC dosing and duration, and a center still running older protocols without acknowledging that literature is a flag worth noting.

The original post nailed the surgeon question but I'd push one step further. When I've sat in on patient consults at major centers, the surgeons who do this well will tell you their specific complication rates without you having to ask. If you have to drag that number out of them, that tells you something.

Talk to your own oncologist about what the post-op chemo plan looks like before you commit to any center for the surgery itself. The two decisions are connected in ways that aren't always obvious upfront.
3 found this helpful
Medical ✓ Expert Response
What you said about Patricia calling every week... that piece doesn't get enough credit. In 12 years of oncology social work I've watched patients fall through the gap between surgery and chemo more times than I can count, and it almost always happens in that quiet stretch when everyone assumes someone else is checking in.

The emotional weight of that window is real. Scanxiety, the physical recovery, figuring out disability paperwork, all of it landing at once. A 2019 study in the Journal of Psychosocial Oncology found that unmet psychosocial needs peak around weeks 6-10 post-surgery, which is exactly when people feel like they "should" be doing better and stop asking for help.

Some centers have oncology social workers embedded in the care team, not just available if you ask. Worth asking that question directly when you're evaluating a center. "Who do I call at 2am when I'm scared and it's not a medical emergency?" If they hesitate, that tells you something.

And for anyone dealing with the VA delay piece, ASCO has a free resource guide specifically for veterans with asbestos-related diagnoses. Happy to share the link if useful.
3 found this helpful
Family
Oh wow this is so helpful. We're going through something similar right now with Joe and honestly the surgeon piece is exactly what we're wrestling with. He's at a good center here in Tampa but I keep wondering if we should've gone to MD Anderson or somewhere bigger and we're only about six weeks into his immunotherapy so it's not too late to pivot.

The nurse navigator thing really hit me. Joe's got someone checking in but not like what you're describing. Our person is nice enough but she's juggling like fifty patients. Patricia sounds like she actually knew your case. That's the difference between a factory and a real program.

I spent thirty years teaching high school and one thing I learned is that the best teacher in the fancy school building doesn't matter if the kid doesn't feel seen. Same thing here I think. You need someone who treats you like you're the only person they're thinking about that week.

The VA thing is rough. Joe has some exposure history too but we went straight private because honestly I didn't want to wait either. Couldn't afford to wait. You're right about that calculus.

One thing we're doing differently after reading your post is asking about the imaging protocol. We never thought to ask where he gets scanned or who coordinates it. That's such a practical question and you're right that it matters. Driving around to different facilities while you're tired from chemo sounds like a nightmare.

How are you feeling now? Are you back to anything normal or is the recovery still pretty intense?
Veteran
Don't second-guess yourself now, you're only six weeks in. That's the worst time to be thinking about switching because you're deep in chemo side effects and your head's not clear. Real talk, moving Joe mid-treatment is harder on the body than staying put. Here's what I'd do instead: call that nurse navigator and be direct. Tell her you need weekly check-ins, not whenever she gets around to it. If she pushes back or says that's not how they do it, then you start looking. But most of the time people just need to be asked. What's your surgeon's background, and how many pleural cases has he actually done?
Family
This is so helpful and honestly exactly what people need to hear instead of just looking at hospital rankings on their phone at 2am. Joe's surgeon at Moffitt in Tampa, Dr. Patel, does probably 30-40 pleural cases a year and that was one of the first things we asked about when we got the referral in September. The difference between "we do mesothelioma" and "we do THIS a lot" is everything.

We had the same experience with follow-up imaging. Moffitt has their own radiology right there, same building, and Dr. Patel's nurse navigator Sharon literally knew Joe's CT results before his oncologist did. She was calling us with updates while we were still in the parking lot waiting for official word. That coordination you're talking about between surgery and chemo is real. Joe started immunotherapy in November and they adjusted his whole treatment plan based on what they found during surgery, not just generic protocols.

The VA thing I totally get. We looked into it too because of Joe's military service. The wait was gonna be six, seven months and we didn't have that time. I was a teacher for 35 years so I understand systems move slow, but when it's your husband's lungs you can't just accept the timeline...

One thing we did that I'm glad about, we asked about clinical trials at our first appointment and they actually had one he could qualify for. Didn't end up doing it because the imaging showed he needed surgery first, but just knowing they were tracking current research made us feel like we picked the right place. Your point about that being a sign of a center staying current is spot on.

How's your recovery going now that you're a few months out from surgery?
Patient
This is incredibly detailed and honestly the kind of breakdown I wish I'd had before I started my own evaluation process. I'm in the middle of deciding right now, Stage II peritoneal, diagnosed November, and your point about surgeon volume versus institutional volume just clicked something into place for me.

I've been looking at a couple centers in the Midwest and one in Pittsburgh. One of them kept saying "our mesothelioma team" but when I actually dug into it, the surgeon only does maybe 8-10 peritoneal cases a year. The rest of their meso work is pleural. That's not the same thing and I don't think I really understood that until reading your post. Peritoneal is different enough that the experience has to be specific.

The follow-up imaging thing is huge too because I'm in Cleveland and I've already had the experience of trying to coordinate imaging with providers in different systems. It's a nightmare. I keep a symptom journal anyway so I'm used to tracking details, but having scans done in one place where your surgical team can actually see them immediately makes so much sense.

Can I ask about the chemo side of things since you mentioned having an oncologist on staff. I'm looking at HIPEC as part of my surgery plan and I'm trying to understand how that integrates with systemic chemo afterward. Did your center have a protocol already mapped out before you went into surgery or did they figure it out after they saw what they were dealing with once they opened you up. I want to know if I should be asking about that specifically or if it's something they always customize once they know the extent of what they're removing.

Also did you have any weird complications in those first 8-12 weeks that made you grateful you were close to your follow-up imaging. That's the thing nobody really talks about.
Veteran
Yeah, that's exactly the trap. "Team" sounds good until you realize one guy does 8-10 a year and the rest are general thoracic surgeons covering multiple cancer types. For peritoneal you want someone who specifically does cytoreductive surgery and HIPEC, not someone who dabbles in it. That's a different skillset than pleural work. Have you asked the Pittsburgh place how many peritoneal cases specifically they do per year? That number matters more than anything else they'll tell you.
Family
This is such solid advice and I'm glad you shared the specifics because honestly most people don't. The surgeon volume thing especially. My dad got his initial consult at a major academic center in Chicago that I thought would be the obvious choice, but when I started asking around they were doing maybe 8-10 pleural cases a year. We ended up going to MD Anderson and the difference was night and day, not because of reputation but because their thoracic surgeon does this constantly. Like, he wasn't treating my dad's case as unusual or complex. It was Tuesday for him.

The nurse navigator piece hit me hard because that's exactly where we felt it. Our navigator, Michelle, basically became part of my dad's care team in ways I didn't expect. She knew when to escalate things to me versus when to just handle them, knew his pain patterns, caught a potential chemo side effect before it became serious. That's not happening if you're getting shuffled between departments with no continuity.

One thing I'd add from the medical side: ask specifically about their approach to post-surgical pain management and pulmonary rehab. Not all centers do the same thing after pleural surgery. Some will get you moving again quickly, others keep you immobilized too long and you lose function. We spent October through February watching my dad's lung capacity come back slowly with physical therapy that was coordinated through his surgical team. That coordination matters.

The VA thing I get completely. My dad has VA benefits too and honestly the wait was brutal. We filed his claim in April 2025 and didn't get approval until August. By then we were already deep into treatment decisions elsewhere. The VA isn't bad but it's slow and meso doesn't really care about timelines.

Where are you at now with recovery?

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