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comparing treatment centers - what metrics actually matter for pleural meso

Veteran · · 3,599 views
So I had to pick a center back in June after diagnosis and honestly the metrics they throw at you don't always tell you what you need to know. Everyone wants to see survival rates and five year outcomes but that's not the whole picture.

First thing I did was ask each center what their pleurectomy numbers looked like for that year. Not lifetime. That year. One place told me they do maybe 12 a year, another said 40 plus. The high volume place had better outcomes but that's not everything either.

I asked about their multimodal approach too. Can they do surgery then chemo then radiation all coordinated or are you bouncing between departments. My center in Norfolk had pulmonary, oncology, and radiation all in one building which sounds like it shouldn't matter but it does when you're recovering.

One thing nobody talks about is complication rates. Ask them straight up what percentage of their patients get post op infections or need a second surgery. They might not answer but some will. The center I went with had lower infection rates than the national average which meant something to me.

Also ask how many cases they've done in the last three years specifically. New centers might have great metrics on paper but limited experience. I wanted someone who'd seen a lot of Stage II pleural cases.

The survival numbers are important but they're lagging. By the time you see their published five year data it's already five years old. Ask them what they're doing now that's different. New trials, different chemo combos, whatever.

I also called some guys who'd been treated there. The center let me talk to two patients about three months post op. That told me more than any brochure.

8 Replies

Family
This is so good and honestly wish I'd had this roadmap when Joe got diagnosed back in September. We ended up at a center here in Tampa that checks most of your boxes but I'm kicking myself a little bit for not asking some of these specific questions upfront.

The thing about talking to actual patients though... that's what really changed our perspective. We got to speak with someone about 6 months out from treatment and she was honest about the hard stuff, the fatigue that lasted longer than they said, how the coordination between departments actually mattered when she felt terrible. That conversation was worth more than any pamphlet.

I like what you said about asking what they're doing differently now. We asked about clinical trials and Joe ended up in an immunotherapy protocol starting in November that wasn't even on their website. You have to really push those conversations or you just get the standard talk.

One thing I'd add from teaching all those years, sometimes the best indicator is how they answer questions you're not even sure how to ask. If they're patient with you being confused and scared, if they slow down and actually explain things instead of just quoting statistics at you... that matters. That's the culture of the place and you're gonna be spending a lot of time there.

Did your center end up being what you hoped it would be once you actually started treatment?
Medical ✓ Expert Response
This is genuinely one of the better breakdowns of how to evaluate a center that I've seen on this forum, and I treat patients at a high volume institution so I've seen both sides of this conversation.

The volume question is real. The MARS 2 trial data published in 2021 showed outcomes correlating strongly with institutional experience, and the threshold most thoracic surgeons cite informally is around 20 to 25 pleurectomy/decortication cases per year before you start seeing consistent outcomes. Your instinct to ask about that specific year rather than lifetime numbers is exactly right. Surgeons retire, teams change, a center's "1,000 cases" can be misleading if half of those happened fifteen years ago.

The complication rate question is one I wish more patients asked. Post-op empyema (infection in the pleural space) rates vary pretty dramatically across centers and it's not always reflected in the survival statistics people publish. A center can have decent median survival numbers and still have patients spending weeks dealing with preventable complications that tank their quality of life during treatment.

The coordinated care piece matters more than it sounds like it should. I've seen patients lose three weeks of treatment momentum just from scheduling delays between departments that weren't talking to each other well. Three weeks is not nothing with this disease.

The one thing I'd add to your list is asking specifically whether their tumor board meets weekly and whether your case would actually be presented there or just flagged for review later. There's a difference.

Talk to your own oncologist about how to frame these questions, but the instincts you brought to this process back in June were sound.
3 found this helpful
Veteran
That's solid intel, especially the part about asking for current year numbers instead of lifetime stats. I'm still waiting on my VA claim to get approved so I haven't picked a center yet but I'm stealing all of this when I do.
Veteran
Good call on waiting for the VA to sort it out, W - they'll usually cover most of it once it's approved. When you're ready to make calls, write down those questions beforehand so you don't forget anything when you're stressed. I made a list and checked them off like a pre-deployment checklist. And don't be shy about asking to talk to other patients, most centers will connect you if they're confident in their work.
Veteran
Got my surgery at Eastern Virginia Medical Center back in August so I'm tracking with what you're saying here. The difference between centers is real and most guys don't dig deep enough.

When I was looking, I asked the same questions you mentioned. Their surgical team had done 38 pleural cases that year. I also asked about their chemo protocols and found out they were running a trial with a different cisplatin combo than what the standard was. That mattered to me because I wanted access to newer stuff.

One thing I'd add: ask them point blank what happens if complications show up. My pleurectomy went clean but I knew going in that EVMC had an interventional radiology team right there if I needed anything post op. Didn't need them but knowing they were 200 yards away made a difference in my recovery mindset.

The infection rate question is good. I didn't know to ask that initially but after surgery I found out their rate was something like 3 percent below the national average. Small number but it adds up when you're the one healing.

Don't sleep on the logistics piece either. I'm retired so I could drive to appointments but if you're still working or traveling far, having all your departments in one spot saves you getting worn down. You're already dealing with enough without bouncing around between buildings.

The patient calls were helpful too. Talked to a guy named M. who was about six weeks ahead of me in recovery. He told me exactly what to expect on weeks three and four which nobody else mentioned. Real stuff matters more than the glossy outcomes.
Veteran
That's solid advice and I wish I'd had that roadmap back in October when this thing got confirmed. I went with the VA system first because that's what I'm entitled to and honestly the VA docs at San Diego weren't terrible but they kept pushing me toward palliative care instead of aggressive treatment. Got frustrated real quick with that approach.

Ended up at a civilian center in January after my VA claim finally cleared and yeah, the multimodal coordination made a huge difference. They had me lined up for surgery in December, chemo starting a month after, all the same team basically knowing what was coming next. VA had me waiting between departments like I was picking up dry cleaning.

The volume thing you mentioned, I asked about that too. Guy doing my pleurectomy had done over 200 in his career. That number stuck with me because back at Camp Lejeune in 1979 I knew some old timers who'd been exposed to that asbestos in the barracks insulation and I remember thinking they deserved someone with that kind of experience if it ever came to it. For me it came to it 46 years later.

Post op infection rates is actually something the VA surgeon mentioned without me asking, which surprised me. He said their infection rate was 8 percent, which he said was below average. I didn't get infected thankfully but that stat made me feel like someone was actually paying attention to outcomes instead of just moving bodies through.

One thing I'd add to your list, ask them about their follow up schedule. My center has me in for imaging every three months for the first year, then every six months. That's more aggressive than some places do but catches recurrence early if it happens. That matters.
Medical ✓ Expert Response
Frank's point about Eastern Virginia actually connects to something I want to add here. Volume matters, but so does what that volume looks like pathologically. A center might do 40 pleurectomies a year but if half are Stage I epithelioid cases, their outcomes data doesn't really apply to someone presenting with Stage II biphasic disease.

The MARS 2 trial published in 2021 out of the UK showed that even at high volume centers, histological subtype (meaning the cell type of your tumor) changed outcomes significantly enough that it should factor into where you go. Some centers have specific expertise in biphasic cases. Others are better with pure epithelioid. Worth asking directly.

So when I talk to patients evaluating centers I always say, ask them what percentage of their recent cases match your specific subtype. That's the number that actually tells you something about your situation. You're not looking for general volume anymore, you're looking for relevant volume. There's a real difference there and most brochures won't make that distinction for you.

Talk to your own oncologist about this before making any calls, they can sometimes tell you which centers in the region are seeing more of your particular presentation.
3 found this helpful
Medical ✓ Expert Response
Frank, the Eastern Virginia connection is interesting because I've seen their outcomes data and they're doing solid work for a regional center.

One thing nobody's touched on yet and I think about this a lot with my own patients: ask specifically who performs the surgery. Not just "does this center do pleurectomies" but is it the same attending surgeon every time or do fellows take over once you're open. At academic medical centers especially, the attending may do the first 20 minutes and the close, and a fellow handles the middle. Some patients are fine with that. Some aren't. You have the right to ask.

The other metric that genuinely predicts outcomes in the literature, the Flores et al. data on this is pretty consistent, is 30-day mortality rate not five-year survival. Five year data tells you about patients from 2019. Thirty-day mortality is right now.

Talk to your own oncologist about any of this before you make calls, obviously. But if I were sitting across from a newly diagnosed patient today I'd have them ask both those questions in the first five minutes.
2 found this helpful

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