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Joe's Stage III and picking a treatment center - what actually mattered to us

Family · · 99 views
So we were in this spot back in September when Joe got diagnosed, and then by November we needed to figure out where to do his immunotherapy and whether surgery was even on the table. Stage III pleural is no joke and honestly I was terrified we'd picked the wrong place.

What I learned pretty fast is that it's not just about the name of the hospital. I know that sounds obvious but I mean it. We live in Tampa and our first oncologist was fine but he wasn't really pushing any multimodal approach, it was just going to be chemo and see what happens. So we drove up to Jacksonville to talk to another team, and the difference was night and day. The Jacksonville doctor actually had numbers on how many mesothelioma cases they see per year and what their outcomes looked like. I'm a retired teacher so I know when someone's just reading from a script versus actually knowing their stuff.

Three things that made the difference for us. First, did they do multimodal treatment and had they actually done it multiple times. Second, ask about their surgeon if surgery is possible. Joe's team in Jacksonville had a surgeon on staff who specializes in pleural cases and works with the oncology team before and after. Third, and this one surprised me, ask if they have experience with the specific immunotherapy drugs your person is getting. We learned that some centers rotate through what they use and others stick with protocols they know cold.

The waiting between appointments was brutal and honestly I cried in the car a few times driving back from consultations because you're sitting there thinking this might be the place that saves your husband's life or the place that wastes time. But yeah we went with Jacksonville and Joe started treatment there in November.

I guess my point is don't just go to the biggest cancer center. Go to the place that has actually treated a lot of meso cases specifically and can show you the numbers...

8 Replies

Veteran
Man, you nailed this. That's exactly what I'm dealing with right now and it's infuriating. Got diagnosed in October, had surgery in December at Scripps down here in San Diego, but getting to that point was like pulling teeth with the VA.

Here's what happened with me. I filed my VA claim in November after the diagnosis and I'm still waiting for them to move on it. Meanwhile I had to go private for the surgery because I wasn't about to sit around while some regional VA facility tried to figure out if they could even handle mesothelioma. The surgeon I ended up with at Scripps asked me point blank about my asbestos exposure and when I mentioned Camp Lejeune and the USS Iwo Jima he nodded like he'd heard it before. That told me something right there.

Your point about the surgeon being part of the team is huge. I learned that the hard way. My oncology group wanted to refer me to some surgeon two hours away who didn't even specialize in pleural cases, and I pushed back. Found out Scripps had their own guy who works with the meso team regularly and understands the protocol before and after. Makes all the difference.

The VA stuff is still a nightmare though. Two months in and I'm getting the runaround. If you or Joe are vets, don't wait on them. That's my advice. Get treated where the specialists actually are, then fight the VA for coverage after. It's backwards but it's the only way to not waste time.
Medical ✓ Expert Response
Everything you described tracks with what the research shows. Volume really does matter with mesothelioma specifically. The IASLC (International Association for the Study of Lung Cancer) has published data showing that surgical outcomes in pleural mesothelioma correlate pretty directly with how many cases a center does per year, and we're talking a meaningful difference, not marginal.

The immunotherapy piece you mentioned is something I wish more families knew to ask about upfront. With nivolumab plus ipilimumab (the checkpoint inhibitor combination that's now standard of care for many pleural cases after the CheckMate 743 trial), there's a real difference between a team that has managed hundreds of patients on that regimen versus one that rotates protocols. The toxicity management alone is its own skill set.

And the surgeon thing. yes. A thoracic surgeon who has done 50 EPP (extrapleural pneumonectomy) or P/D (pleurectomy/decortication) procedures has a fundamentally different feel for what's resectable than someone who does three a year. Joe's team in Jacksonville having that person already in conversation with the oncologist before treatment even starts is exactly how it should work.

What you did by driving up there in October or November, sitting in that room and asking for actual numbers, that's not nothing. A lot of families don't know they can do that.

Talk to your oncologist about any changes in the plan, obviously, but the instinct you followed was sound.
3 found this helpful
Family
Oh wow, thank you for backing that up with actual research - that's really validating because honestly when we were making the decision I was just going on gut feel and what the doctors were telling us. The volume thing is so real, like I could just tell the Jacksonville team had seen way more cases than our first place. And yeah the immunotherapy protocols, Joe's actually on nivolumab and I'm so glad we asked because turns out the Jacksonville center had been using it for their meso patients for over two years by the time Joe started. Makes you wonder how many people just end up at a center that's winging it with a drug they barely have experience with. Did your research show anything about whether timing matters too, like how quickly someone should get to that specialized center after diagnosis?
Family
We're dealing with something similar right now with my dad and honestly this is so helpful. The multimodal thing especially, his palliative care team keeps saying surgery isn't an option but we haven't actually talked to a meso specialist about whether they'd even consider it.
Medical ✓ Expert Response
Everything you described about that Jacksonville team rings true from what I see in practice. Volume really does matter with meso. The data from the International Mesothelioma Interest Group consistently shows that centers doing fewer than 10 pleural cases a year have meaningfully worse outcomes, and that gap gets wider when surgery is involved. So asking for actual case numbers wasn't just good instinct, it was exactly the right question.

The surgeon piece is something families don't always know to ask about until it's almost too late. Pleurectomy/decortication (the lung-sparing surgery sometimes used in stage III) requires someone who does this specifically, not a thoracic surgeon who does it occasionally between other cases. And the pre-treatment coordination you mentioned, the surgeon being involved before chemo or immunotherapy even starts, that's not standard at every center. At centers where I've seen the best outcomes, the tumor board (a weekly meeting where oncologists, surgeons, and radiologists all review the same case together) is meeting on meso patients specifically, not just folding them into a general thoracic board.

On immunotherapy, you're right that nivolumab plus ipilimumab (the combination that became standard after the CheckMate 743 trial published in 2021) isn't something every center has deep experience managing. The toxicity profile is real and knowing how to handle immune-related side effects matters.

Joe is lucky to have someone driving him to Jacksonville and crying in the car and still showing up. Talk to his oncologist about any questions that come up as treatment moves forward.
2 found this helpful
Veteran
Same situation here, stage II but the VA was dragging their feet so we ended up at a civilian center in San Diego that actually knew what they were doing. The difference between a doctor who's seen 50 meso cases versus one who treats it like any other lung cancer is everything.
Veteran
Yeah that's exactly what we're doing right now, trying to figure out if we should stay local or go somewhere that actually knows meso. Your point about the surgeon being part of the team hits different because ours just does the cutting without talking to oncology beforehand. Might have to make that drive too.
Medical ✓ Expert Response
What you figured out about case volume is exactly right, and I wish more families knew this going in. The data on this is pretty consistent. Centers that see higher volumes of rare cancers like pleural mesothelioma tend to have better outcomes, and the NCCN (National Comprehensive Cancer Network) guidelines actually recommend referral to high-volume specialty centers for this reason. It's not just about prestige.

The surgeon piece you mentioned is so important and honestly underappreciated. For Stage III pleural, the question of whether to do an EPP (extrapleural pneumonectomy, removing the lung and surrounding tissue) versus a P/D (pleurectomy/decortication, lung-sparing) is genuinely complex and the surgical team's experience with both options shapes what gets recommended. A surgeon who has only done one of those procedures will tend to see everything through that lens.

And your instinct about immunotherapy protocols is spot on. Nivolumab plus ipilimumab got FDA approval for unresectable pleural meso in 2020 based on the CheckMate 743 trial, which showed real survival benefit over chemotherapy, but not every center has deep experience managing the immune-related side effects that come with it. That familiarity matters a lot when things get complicated at 2am.

I'm really glad Joe got started in November. Please do keep his local team in the loop too, because coordination between your Jacksonville specialists and whoever handles day-to-day care closer to Tampa will matter as treatment goes on. Your oncologist there should know everything.
2 found this helpful

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