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

Veteran · · 10 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.

4 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.
1 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.
1 found this helpful

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