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stage II pleural meso - how I picked my treatment center and what actually mattered

Veteran · · 67 views
So I got diagnosed October 2025 after a persistent cough that wouldn't quit, had the surgery in December at UC San Diego. Before that I spent weeks trying to figure out where to go and what actually matters when you're picking a place. I want to lay out what I learned because a lot of the stuff online doesn't help much.

First thing: your surgeon matters more than the hospital name. I talked to three places, Brigham up in Boston, National Jewish in Denver, and UCSD. The surgeon at UCSD, Dr. Raymond Chen, sat down with me and my wife and walked through exactly what he was going to do, how many he'd done, what his outcomes looked like. Not a sales pitch, just facts. Brigham's guy was good too but the travel was gonna kill us and my VA claim was already a mess without adding that on top.

Second: ask them point blank which multimodal approach they'd actually use on you and why. Surgery, chemo, radiation, TTF, whatever. Don't let them dance around it. At UCSD they said pleurectomy plus cisplatin-pemetrexed and then we'd see about radiation. That's what happened. Some places wanted to throw everything at it immediately and that worried me because I'm stage II, not stage IV.

Third: find out if they work with the VA. This one killed me. My claim was filed in November and still sitting in November when I had surgery in December. But UCSD has a VA liaison and she helped push things through. That mattered because the VA's gonna cover most of it if you served at Camp Lejeune or on a ship with asbestos like I did on the Iwo Jima back in 1980.

Fourth: ask how many meso cases they do a year. UCSD does probably fifty, sixty a year. That's solid. Some hospitals do five or six and they're just gonna follow a protocol anyway.

And get a second opinion. I'm serious. Take your scans to another place, another surgeon. Mine said the same thing UCSD said so I felt better about the decision.

Recovery's been harder than I expected. Three months out now and I still get winded but the cough's gone which is something. The chemo was rough but we knew it would be.

8 Replies

Family
You did such a good job laying this out. Joe and I went through something similar when he got diagnosed in September, except we jumped straight to immunotherapy in November at Moffitt Cancer Center here in Tampa instead of surgery first. But that surgeon piece you mentioned... yeah, that's everything. We talked to three oncologists too and the one at Moffitt actually listened to us instead of just running through his standard spiel.

The VA thing resonates because we're dealing with that now too. Joe's claim is still processing but having someone in the hospital who knows how to talk to the VA has made a huge difference. It's not just about the money either, it's one less thing to stress about when you're already dealing with chemo side effects.

Your point about asking them to actually explain their plan instead of just nodding along... I wish I'd been that direct earlier. We asked good questions but not always the right ones, you know? Like we didn't ask how many immunotherapy cases they see versus surgery cases, and that would've helped us understand why they were pushing that direction for Joe's stage.

Three months out and still getting winded makes total sense. Joe's dealing with fatigue that just won't quit and we're learning to be okay with that instead of fighting it like I used to fight a tough class of seventh graders. Some days are better than others and that's just how it is now.

How's your energy for the chemo side effects now? Did they give you anything that actually helped with the nausea or fatigue?
Medical ✓ Expert Response
The VA liaison piece you mentioned is so real. In my work I've sat with veterans who had surgery before their claims even got assigned to a reviewer, and the stress of that financial limbo on top of a new diagnosis is genuinely its own kind of trauma. UCSD having someone in that role who actually knows how to push internally... that's not standard everywhere, and people don't know to ask for it.

Something I'd add that nobody's touched on yet: the psychosocial intake process at a center matters too. When a place does fifty-plus meso cases a year they tend to have a social worker or patient navigator already embedded in the tumor board. Smaller programs often don't, and that gap shows up later when you're three months post-op and still winded and nobody's checked in on how you're actually doing. A 2022 survey in the Journal of Psychosocial Oncology found that oncology social work integration reduced distress scores in mesothelioma patients by something like 34 percent over six months. Talk to your own care team about what's available to you specifically, but it's worth asking who's on the bench beyond the surgeon and the oncologist.

And the journaling thing sounds small but writing down what questions you want answered before each appointment genuinely changes those conversations.
3 found this helpful
Veteran
Same timeline as me man, diagnosed October and had surgery December. That VA liaison thing is huge, mine's still dragging and I wish I'd pushed harder on that front early.
Veteran
Same boat, got my diagnosis in June and had the pleurectomy in August at the VA hospital here in Norfolk. That point about the surgeon mattering more than the name resonates with me, mine spent time explaining what he was actually doing instead of just telling me what he was gonna do.
Patient
I'm in the middle of evaluating HIPEC surgery options right now so this is incredibly timely. A few things really jumped out at me from your post.

The multimodal approach question is something my oncologist kind of glossed over at first and I had to push back. I've been reading through the ASCO guidelines from last year and there's actually pretty significant data showing that for stage II peritoneal cases, the sequencing matters way more than people talk about. I'm trying to figure out if HIPEC first followed by systemic chemo is better than the reverse, and honestly the literature is still mixed depending on cytoreduction completeness. Did your surgeon at UCSD have strong opinions about sequencing or did they adjust based on what they found during surgery?

Your point about the VA is something I'm dealing with right now. I worked at the Johns-Manville plant in Elyria from 1978 to 1985, so my exposure's documented pretty clearly, but the claims process is moving at a glacial pace. November diagnosis, still waiting on final determination in January. I've been keeping detailed notes about every symptom and timeline because I read somewhere that helps with appeals. My sense is that having a hospital system that understands VA bureaucracy isn't just convenient, it's actually part of the treatment plan itself.

How many of the fifty to sixty cases at UCSD would you say were peritoneal versus pleural? I'm trying to figure out if there's a meaningful difference in outcomes depending on whether the center specializes more heavily in one or the other. And I'm curious about the recovery timeline you mentioned. Three months out and still winded sounds about where I'd expect to be, but I'm wondering if there's anything nobody told you going in that you wish you'd known.
Family
I'm reading this at like 10pm after my mom had a rough day with pain management and honestly this is hitting me hard because I'm in the middle of all this right now. She got diagnosed August, stage III, and I moved back to Phoenix to help her figure out treatment while still teaching full-time which is its own kind of chaos. The thing nobody told me that matters so much is asking the treatment center how they handle the emotional whiplash between appointments. Like my mom will have a good scan result and then get devastated by a side effect from chemo and the oncology team is great but they're not the ones sitting with her at 2am when she can't sleep because she's terrified. UCSD sounds like they actually have that piece figured out. We found a therapist who specializes in cancer patients but it took forever and cost money we didn't have budgeted. If I could go back I'd ask every place we consulted with how they support the family member who's basically become a full-time caregiver without warning. That's the thing I wish someone had asked about in my shoes.
Veteran
Man, that's a lot on your plate trying to teach full-time and be her advocate at the same time. The emotional whiplash piece is real, nobody warns you about that part. Between appointments my wife and I would just be in this weird holding pattern where we're trying to act normal but we're not, you know?

One thing that helped us was asking UCSD if they had a social worker or counselor on staff that we could talk to between the big appointments, not just during treatment. Sounds like your mom's pain management is the immediate crisis right now though. Have you asked her oncology team specifically what their protocol is if the pain gets worse between scheduled visits, or are they just saying to manage it at home?
Patient
Have you asked them specifically about their HIPEC protocol and complication rates? I'm asking because the studies on heated chemotherapy versus standard delivery are still pretty mixed for peritoneal cases, and I want to make sure whoever I choose isn't just doing it because it's trendy.

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