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how did you pick your treatment place? stage 2 here in dallas

Patient · · 98 views
So I got diagnosed stage 2 pleural back in december and now I'm trying to figure out where to actually get treated. There's a couple hospitals around here that say they do mesothelioma cases but I don't know if they're any good or if I should travel somewhere else. I'm 68 and retired so I can handle getting around but don't wanna waste time going somewhere that doesn't know what they're doing.

Anybody else had to make this choice? What did you look for? I'm thinking I need a place that does a lot of these cases, not just one or two a year. My doc here seems competent enough but I want to know if there's specialists out there who are gonna give me better odds.

Also wondering if certain places are better for my type, pleural, stage 2. I worked HVAC for 25 years so I know when something's not right, and something about just going to my regular hospital doesn't feel right either.

Any advice appreciated.

8 Replies

Family
Your gut feeling about needing a specialist center is spot on, those places that handle high volumes of mesothelioma cases have better outcomes, and at stage 2 you're in a position where that expertise actually matters. I'd look for centers that do multimodal treatment (surgery plus chemo, that kind of thing) and ask specifically how many pleural cases they do annually, anything under 10-15 and I'd probably keep looking. My dad's at a major academic center now and the difference between his first oncologist and the mesothelioma specialist here was honestly night and day.
Medical ✓ Expert Response
Your instinct about volume matters. And like Sarah T. touched on, there's real data behind that. The IASLC (International Association for the Study of Lung Cancer) has shown that centers doing fewer than 5-6 mesothelioma cases per year have measurably worse surgical outcomes. So "a couple cases" isn't enough.

But here's something nobody mentions: ask specifically whether they have a dedicated mesothelioma tumor board. That's a multidisciplinary team, thoracic surgeon, oncologist, pulmonologist, pathologist, who review your case together. That's different from one good doctor working alone.

Stage 2 pleural actually puts you in a position where trimodality therapy (surgery plus chemo plus radiation) might be on the table, and not every center has the surgical volume to do EPP (extrapleural pneumonectomy) or P/D (pleurectomy/decortication) safely. Those are the two main surgical approaches and the outcomes really do depend on how many the surgeon has done.

UT Southwestern in Dallas has a thoracic oncology program worth asking about. MD Anderson in Houston is a recognized high-volume center and it's drivable from Dallas.

Definitely talk to your oncologist before making any moves. But asking "how many mesothelioma cases do you see per year" is a completely fair question to put to any center you're considering.
3 found this helpful
Patient
Yeah, that tumor board thing is exactly what I was missing, didn't even know to ask about that. So when I call around, I should straight up ask if they got a dedicated team that meets regular or am I just gonna be bouncing between different doctors who don't talk to each other? That's the kind of stuff you learn the hard way in HVAC, you know, one guy does the install, another does the maintenance, and nothing gets fixed right til everybody's on the same page.
Family
I'm honestly in the opposite spot from you. My mom's already stage 3 when we figured it out in August, so we didn't really have the luxury of shopping around much. But I totally get what you're saying about that gut feeling. I moved down here to Phoenix to help her and we ended up at a center that handles a ton of mesothelioma cases, and even just in these few months I've seen the difference between how they talk about her case versus what her regular oncologist was saying before.

What I'd say is don't let distance scare you off if you find the right place. Like yeah it's a hassle getting around, but you're 68 and retired so you can actually do it, use that advantage while you've got it. At stage 2 you're in such a better position than a lot of people here. My mom's oncologist told us that centers with mesothelioma specialists see patterns and treatment options that regular hospitals just don't deal with enough to know about.

The HVAC background thing actually gives you a good head, you know how to ask the right questions about whether something's legit or not. When you call these places, ask them straight up how many pleural cases they've done in the last year and what their complication rates look like. A real mesothelioma center won't dodge that.

Sorry you're dealing with this. The fact that you're being proactive about it now is huge though.
Medical ✓ Expert Response
Your instincts about this are really worth listening to. You're right that volume matters a lot with mesothelioma, a center that sees 20+ cases a year is going to approach your situation very differently than one that sees 2 or 3.

For pleural stage 2 specifically, you really want a team that includes a thoracic surgeon who specializes in mesothelioma (not just general thoracic surgery), a medical oncologist familiar with current protocols, and ideally someone who knows the clinical trial landscape. Those three working together changes things.

A few places that come up consistently for mesothelioma expertise in your region, MD Anderson is in Houston which I know is a drive but it's one of the top mesothelioma programs in the country. UT Southwestern right there in Dallas also has a solid thoracic oncology program and is worth a serious look before you decide to travel anywhere. Getting a second opinion doesn't mean you have to leave your current doc behind either, a lot of people do both.

The fact that you're stage 2 and retired means you have real options here. Don't let urgency push you into a decision before you've asked a few places "how many pleural cases did you treat last year and what does your multidisciplinary team look like."

And honestly... the emotional weight of all this decision-making is a lot to carry on top of a new diagnosis. If you find yourself feeling overwhelmed or anxious in ways that are hard to manage, talking to a counselor who works specifically with cancer patients can really help you think more clearly through these choices. Some centers have social workers on the team you can access for free.

You clearly know how to ask good questions. Trust that.
3 found this helpful
Medical ✓ Expert Response
Your instincts here are solid. Volume really does matter with mesothelioma. Centers that see 20+ cases a year have teams that have worked through the hard decisions many times over, versus a general thoracic program that sees 2 or 3. That's not an insult to community hospitals, it's just how surgical and oncologic expertise develops.

For pleural stage 2 specifically, the big question is whether you're a candidate for surgery, either EPP (extrapleural pneumonectomy, removal of the lung and surrounding structures) or P/D (pleurectomy/decortication, which spares the lung). Stage 2 sometimes means surgery is still on the table and that's a decision that should be made by a surgeon who has done hundreds of these, not dozens. The MARS2 trial data published a couple years ago has actually shifted how some centers think about surgical versus non-surgical approaches, so you want someone current on that.

Texas does have some decent options but honestly for mesothelioma I'd look at the NCI-designated cancer centers with dedicated mesothelioma programs. Baylor and MD Anderson are both in your region and MD Anderson in Houston in particular has a mesothelioma program with real volume. The travel is manageable and worth a consultation at minimum.

What I'd ask any center before committing: how many pleural meso cases did you treat last year, who specifically is my surgeon and how many of these have they done, and do you have a multidisciplinary tumor board (meaning oncologists, surgeons, pulmonologists, and radiologists reviewing your case together, not just one doctor deciding).

Definitely run all of this by your own oncologist too. Every case is different and there may be local factors I'm not aware of.
3 found this helpful
Patient
Sorry if this was asked before but I kinda went through this same thing a couple months ago when I got my diagnosis. I'm stage 1 so maybe different situation but I get what you're saying about wanting the right place.

Honestly I was scared to ask around at first but I found out that the big cancer centers. The ones that do a ton of cases. They really do seem to know more. Like they've seen it all before and they know what works and what doesn't. I called around to a few places and asked how many mesothelioma patients they treat a year and that made a difference in how I felt about them.

I didn't travel far cause I'm in Philly but I've heard some people on here talk about going to bigger cities to get treated even if it meant driving or flying. One guy said it was worth it cause the doctors there had a whole team just for this stuff. Not like at a regular hospital where mesothelioma is just one thing they do sometimes.

You might wanna ask about if they do surgery and chemo together and stuff like that. I think that matters for pleural cases. And don't be shy about asking how many patients they've treated and what their results were. You're the customer here, you know? You get to pick.

I was real nervous at first too but asking questions helped me feel better about it all. Hope you find a good place down there in Dallas.
Patient
went to pitt - they do alot of these cases. asked my doc straight up how many mesothelioma patients they see a year. worth asking yours that same question.

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