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picking a treatment center when youre stage 2 or 3 - what actually separates the good ones

Veteran · · 35 views
So I had my pleurectomy at EVMS back in August and before that I spent about six weeks talking to different centers. Navy taught me how to vet people and honestly it's the same process. You don't just look at their brochure.

First thing. Call them directly and ask how many pleural meso cases they do per year. Not total cancer cases. Pleural specifically. If they hem and haw or give you a range like 15 to 25, that's a red flag. Good centers know their number. Mine does about 40 to 50 a year. That matters because your surgeon's hands need to be on this regularly.

Second. Ask who does your staging. Is it the same surgeon who's gonna operate on you or is it some radiologist reading scans from their office. You want the surgeon doing the staging because they know what they're looking at in terms of what they can actually resect. Different eyes see different things.

Third and this one matters more than people think. Ask about their multimodal approach. Surgery alone is not the answer. Chemo before or after surgery, sometimes both. Some centers will push you straight to surgery because that's what they do. Others will say here's the chemotherapy protocol we use, here's how we sequence it. Dr. Voigt at EVMS walked me through exactly how they were gonna approach my case before we committed. Not just the surgery but the whole plan.

Fourth. Infection rates. Complication rates. Ask for their numbers. Honest centers will give them to you because they're proud of their outcomes. If they won't share that data or they say it's proprietary, move on.

Fifth and I can't stress this enough. How far are you willing to travel and for how long. I'm in Norfolk so EVMS was local. But I would've gone to Houston or Boston if the fit was right. You're gonna need follow-up appointments and if something goes wrong you need to be able to get back there fast. Recovery's not a one-shot deal.

I called Mayo, MD Anderson, and EVMS. Mayo felt like a machine. Good machine but a machine. MD Anderson had the numbers but the surgeon I talked to seemed more interested in his research than my case. EVMS had a surgeon who listened and a whole team approach. That's what I went with.

Don't get sold on reputation alone. Some big names are big because they're good. Some are big because they're good at marketing. Ask the hard questions. Make them prove it.

14 Replies

Family
This is so solid. I'm a nurse practitioner so I live in this world professionally, but watching my dad go through staging and treatment selection taught me things no textbook covered.

The multimodal piece you mentioned is huge. We consulted with three centers in March when dad was diagnosed and one of them literally said "we'll do the pleurectomy and you'll follow up with medical oncology wherever." That's not a plan, that's a handoff. Northwestern actually sat down and showed us how they sequence induction chemotherapy, surgery timing, and adjuvant treatment based on what they find intraoperatively. Completely different conversation.

I'd add one thing to your list that I wish we'd known earlier. Ask them specifically how they handle complications post-op because it will happen. Dad developed a persistent air leak after his procedure and the difference between a center that has a protocol for that versus one that's just figuring it out in real time is massive. We ended up back at Northwestern twice in those first six weeks and I was grateful they had seen this exact scenario before.

The travel thing is real too. We're in Chicago and could've gone to MD Anderson but honestly at palliative stage now I'm glad we stayed regional. He's been on palliative care since October and having a team we know, that knows him, has made everything smoother when things decline.

Your point about the surgeon doing staging is exactly right. Two different pairs of eyes will read the same CT differently.
Veteran
Yeah that handoff mentality is exactly what I'm talking about. Sounds like your dad's lucky he had you there to catch that difference because most people don't know to ask. Northwestern's got a solid reputation for that integrated approach. How's your dad doing post-op now, or are you guys still in the treatment phase?
Patient
I'm still in the decision phase myself, diagnosed just last month, so I'm basically living in spreadsheets right now. One thing nobody's mentioned yet is asking about their pathology review process. When I called around, I asked specifically who confirms your diagnosis and whether they do a second pathology read in-house before committing to a treatment plan. Turns out one center I spoke with was relying on the biopsy report from my local hospital without having their own pathologist review it. That scared me off immediately because peritoneal meso can be tricky to differentiate from other malignancies and I wanted fresh eyes on my tissue samples.

Also, and this might sound weird, but ask them directly about their experience with your specific stage and histology. Stage II peritoneal is different from stage II pleural, and epithelioid behaves differently than biphasic. I've been keeping a detailed log of every conversation and one center kept talking about their pleural protocols even after I clarified I had peritoneal. That's when you know they're not really listening to your case individually. The good ones immediately shifted gears and told me about their peritoneal-specific multimodal approach, which for my staging usually means neoadjuvant chemo followed by HIPEC and then adjuvant. One center even pulled up their specific HIPEC protocol during our call, which was impressive. That kind of preparation tells you they actually prepare for these conversations.
Medical ✓ Expert Response
This is one of the best breakdowns I've seen on this forum and the volume question is something I push hard on too. The literature on surgical volume and outcomes in pleural mesothelioma is pretty consistent. The Burt et al. data out of Memorial Sloan Kettering showed meaningful outcome differences once you get above certain annual case thresholds, and that wasn't a small dataset.

The staging point you made is something families miss constantly. Imaging reads and intraoperative assessment are genuinely different skills and they inform very different decisions. I've sat in on cases where what the scan suggested and what the surgeon found when they opened were not the same picture.

The multimodal sequencing piece is where I'd add one thing. When you're asking about their chemotherapy protocol, ask specifically whether they have a thoracic oncologist embedded in the team or whether they're referring you out. Integrated teams make a real difference in how quickly they can respond if you're having toxicity issues mid-cycle. A center where I consulted back in 2019 had a 48-hour response loop between surgery and medical oncology and it showed in their complication management.

Your read on the big name vs. good marketing distinction is fair and I'd say it applies even within a single institution. The department's reputation and your specific surgeon's volume are not always the same number. Ask about your surgeon specifically, not the program overall.

Talk to your own oncologist about how these criteria apply to your specific staging and histology before making any final calls.
3 found this helpful
Veteran
Yeah that staging piece is huge. I watched them do mine and the surgeon found things on the table that didn't show up on the scans. That's the difference between someone who does this work versus someone reading pictures. Appreciate you backing that up with the data, gives people confidence they're not just listening to an old sailor talking about his gut feeling.
Veteran
Same approach I took, Chief. Called them like I was vetting a new command and EVMS answered every question straight. That matters more than the name on the building.
Veteran
That's solid advice and it lines up with what I learned going through this. I'm stage II, had my surgery at Balboa in December after the VA finally cleared it in November. Before that I spent about two months trying to figure out where to go because the VA wasn't exactly pushing me toward the best option.

The thing about asking specific numbers, that resonates because I did the same thing. Called three places. One guy told me "we see a lot of lung cases" which is not the same thing. I pressed harder and found out they do maybe 8 pleural cases a year. That's not enough hands-on experience for something this specific. Balboa does around 30 to 35 a year and they were upfront about it immediately.

Your point about the surgeon doing staging is exactly right. I had a radiologist read my CT and then Dr. Chen at Balboa looked at the same images and said no that's not what I'm seeing. Different perspective entirely. He could see what was actually resectable versus what looked bad on film. That matters for the whole game plan.

One thing I'd add since you mentioned multimodal, chemo sequencing is huge and it varies. I'm doing neoadjuvant chemo now before a second surgery because that's what they determined was best for my specific staging. Another vet I know at Camp Lejeune went straight to surgery somewhere else and they're already talking about whether adjuvant chemo makes sense. Different centers, different approaches. You want the team that's thinking about YOUR case not just running a standard protocol.

The VA claim thing, file it regardless of where you go. I filed in November, still waiting on a decision, but having it in the pipeline matters. And yeah travel is real. I'm San Diego, Balboa's local for me which helped but I would've gone to Houston if the fit was better.

Don't rush the center decision. This is the one thing you get to control right now so control it properly.
Patient
Hey that's solid advice. I'm Stage 1 so different ballgame than what you're dealing with but I went through some of that same vetting process before my EPP back in February at Henry Ford here in Detroit.

The thing about asking specific numbers really stuck with me. When I called around I asked how many EPP surgeries they do and one place told me "oh we do pleurectomies all the time" which is not the same thing and I almost missed that. Henry Ford was straight up. They said we do about 8 to 12 EPP cases a year and here's our guy, Dr. Weksler, and he'll be the one talking to you from day one. No middleman. That mattered to me coming from the auto industry where you know who's doing the work.

The multimodal thing is what probably saved my butt too. Before surgery they hit me with three rounds of chemo, the tune-up as I call it, then the surgery in Feb, and they're talking about maybe more chemo depending on what they find. That whole roadmap was laid out upfront. I wasn't gonna walk into an OR blind.

One thing I'll add though, insurance stuff. Make sure whatever center you pick is in network or at least that your insurance will play ball with them. I spent a solid week in March dealing with denials and appeals. Not fun when you're still recovering. Ask them about their billing people before you commit. That's not sexy to talk about but it's real.

You did good homework. That listening piece you mentioned with your surgeon makes all the difference.
Family
This is so smart and honestly it's exactly what I wish someone had told us upfront. Joe's at stage three and we're doing immunotherapy right now at Tampa General, but we went through this same vetting process back in September when he was first diagnosed and it was overwhelming.

What really stuck with me from your post is the multimodal thing. Our oncologist here sat down with us and walked through what comes next, not just what's happening now. That made all the difference because we weren't just passively showing up for appointments, we understood the whole plan. Teaching for 32 years taught me that people need context, you know? Same principle applies to your own health.

The travel piece hits different though. We're in Tampa so we looked at Moffitt and some places in Miami but honestly we're also looking at MD Anderson for a second opinion because Joe wants to make sure we're not missing anything. It's a drive but worth it. You're right that it's not just about the surgery date, it's about what happens after and whether you can actually get back there if you need to.

One thing I'd add that nobody really talks about is asking them how they handle it when things don't go perfectly. How do they manage complications, what's their communication like with your local doctors, do they actually follow up or do you just get ghosted after the procedure. We asked that and it mattered.

How's Joe doing post-op? Are you back in Norfolk full time now or still dealing with appointments?
Medical ✓ Expert Response
This is one of the most practical posts I've seen on this forum in a long time and I work in oncology social work so I read a lot of them.

The volume question is so underrated. There's actually research backing this up, a 2019 analysis in the Journal of Thoracic Disease found meaningful outcome differences tied to surgical volume for pleural procedures specifically. Your instinct to push past the brochure is exactly right.

I want to add something from the support side of this that people don't always think about when they're comparing centers. Ask who's on the psychosocial team. Not just "do you have a social worker" but what does that actually look like week to week. Because the treatment plan is one piece of this and honestly it's not the only piece. I've watched patients with excellent surgical outcomes really struggle because nobody was attending to what was happening in their head or in their marriage or with their kids.

The part about travel is something I talk through with almost every patient I work with. One of the women in my Thursday afternoon group drove four hours each way to Moffitt for six months. She said the team continuity was worth every mile. Talk to your own doctor about what makes sense for your specific staging and situation, but don't automatically rule something out because it feels far.

Journaling the questions before each call helped a lot of people I've worked with. You ask sharper questions when you've already written them out the night before.
3 found this helpful
Veteran
Thanks Ms. Rodriguez. Yeah the volume thing is real and most guys don't think to ask it. They just assume a big hospital is a big hospital. Appreciate you backing that up with actual data because people listen to that stuff more than they listen to me telling them what happened on my end. What were you gonna add from the support side? That's important too.
Medical ✓ Expert Response
This post deserves to be pinned honestly. What you laid out is exactly what I walk families through when they're in that six week window before committing to a center, and you said it better than most of the handouts I've put together over twelve years.

The volume question is so specific and so right. There's research out of the thoracic surgery literature suggesting outcomes improve significantly when surgeons are doing these resections regularly, not occasionally. Your "40 to 50 a year" benchmark is real. A center doing eight cases a year is a different world.

The thing about staging that I want to add from what I've seen on the support group side... patients who had their surgeon involved in staging from day one reported feeling much more confident going into the OR. That's not just emotional comfort. It tends to mean fewer surprises mid-surgery about what's actually resectable.

And the travel piece. I had a client who drove four hours each way to UVA for follow-up appointments because that's where she trusted her team. She did it for 14 months. Worth it to her. That math is personal and nobody else can do it for you.

If anyone reading this is in that decision phase and feeling overwhelmed by all of it, talking to an oncology social worker at the center you're considering can help you sort through what matters to you specifically. And if the anxiety around this is persistent, please reach out to a counselor who works in oncology. This kind of decision stress is real and it deserves real support.
2 found this helpful
Medical ✓ Expert Response
This is one of the most practical breakdowns I've seen on this forum and I've been here a long time. The volume question especially. There's real data behind that instinct. A 2018 study out of the Annals of Thoracic Surgery found that surgeons performing fewer than 20 mesothelioma resections annually had significantly worse outcomes than high-volume centers, and the gap wasn't small.

What I'd add from the support side of things, because families go through this too and it's a lot, is that the team around the surgeon matters just as much as the surgeon. When I was working with patients at Penn Medicine a few years back, the ones who did best emotionally and physically had access to a social worker, a palliative care consultant, and a nurse navigator all in the first two weeks. Not eventually. From the start. So when you're vetting centers, ask who else is on the team. If they look at you blankly when you mention psychosocial support, that tells you something.

The point about travel is real too. People underestimate the recovery timeline. We're often talking 4 to 6 months of close follow-up minimum, and if complications happen you do not want to be driving three hours for an emergency scan.

For anyone feeling overwhelmed by all these decisions at once, journaling the questions before each call can really help organize the fear into something actionable. And if the anxiety is persistent, talking to an oncology social worker at your center is worth asking about. Most major centers have them, and it's usually covered.

You clearly did this right.
2 found this helpful
Veteran
Thanks R. Yeah that volume thing isn't just a number, it's literally the difference between how your lungs work after surgery. And you're right about the families. My wife was in every appointment and honestly she caught things I missed because I was focused on the medical side. A center that treats the family like they're part of the team instead of just waiting room furniture makes a real difference. That support piece is the other half of recovery.

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