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picking a surgeon and oncologist for multimodal - what actually separates the good ones

Veteran · · 2,749 views
So I'm about four weeks post-pleurectomy and I'm starting chemo in January and I want to make sure I'm not wasting time with doctors who don't actually know how to run multimodal right. Surgery went fine at Scripps but the oncologist they referred me to seemed pretty generic about meso specifically, kept talking about lung cancer protocols.

I know multimodal means surgery plus chemo plus sometimes radiation but I'm trying to figure out what questions actually matter when you're vetting the team. Like how do I know if my oncologist has real experience running chemo after pleurectomy versus just doing standard chemo for regular lung stuff. Same with the surgeon, they said they do pleurectomy but I need to know if they do enough of them to matter.

VA claim is still stuck in paperwork hell by the way, filed in November and nothing. But that's another battle.

Anybody here gone through picking a multimodal team that actually worked out. What did you ask them. Did you ask how many meso cases they've done that year. Did you get second opinions on the surgery recommendation before you committed.

10 Replies

Patient
Yeah dude, asking how many meso cases they handle a year is huge, I did that and it made a difference. The oncologist I'm with now actually knows the difference between treating lung cancer and meso, which my first guy didn't seem to get at all.
Veteran
That's exactly what I needed to hear. Did your second oncologist give you a straight answer on the number or did you have to dig for it? Mine kinda dodged when I asked directly, which told me everything I needed to know. Already looking at someone else at UCSD who supposedly does more meso cases, so hopefully that conversation goes different.
Family
Joe's surgeon at Tampa General had done over 200 pleurectomies, and honestly that number stuck with me because when we asked she didn't even hesitate. She just knew. That felt different than when the first oncologist we talked to had to look up the staging system mid-conversation. Like I spent 35 years in education and you learn pretty quick who knows their subject cold versus who's reading the script, you know?

The thing that actually mattered most was whether they'd worked together before on meso cases. Joe's oncologist and surgeon communicated constantly, not like "oh I'll just follow whatever the surgery notes say" but actually debating his scans together. We drove to MD Anderson for a second opinion on the surgery recommendation back in October and it was the best $400 copay we spent because it confirmed Tampa General's approach but also told us exactly what chemo protocol made sense after pleurectomy. That intel changed everything when we picked the oncology team.

Second opinions aren't just smart, they're kind of essential. Don't feel bad about it. We asked both surgeons point blank "how many meso patients have you done chemo sequencing for this year" and the difference in their answers was striking. One said eight, one said maybe two. And the chemo after surgery is different because your body's been through trauma and the tumor burden changes. You need someone who's seen that specific pattern repeat.

The VA stuff is its own nightmare. Joe's still fighting that too even though we got private insurance sorted. Sorry you're dealing with that on top of everything else. How are you feeling post-op?
Family
Joe's team at Moffitt ended up being fantastic and I think it was because we asked the exact right questions early on. When we first met with the surgical oncologist back in September, I just straight up asked how many pleural cases they do in a year. He said around 40 to 50 and then actually walked us through what made meso different from regular lung cancer surgery. That's when I knew we were in the right place, you know? A lot of doctors will do pleurectomy but they're not doing it every week like they should be.

For the chemo part, we definitely got a second opinion. The first oncologist was offering cisplatin and pemetrexed which is standard but he didn't really talk about how the timing matters after surgery or how Joe's body might respond differently. Moffitt's medical oncologist actually specializes in mesothelioma cases specifically and she could talk about sequencing and adjusting based on his scan results in November. That made all the difference.

I'd ask them straight: "How many mesothelioma patients have you treated THIS YEAR?" Not lifetime. This year. And ask if they're part of a meso program or center of excellence type thing. We also asked about their complication rates for surgery and their response times if Joe had issues during chemo. You want people who talk to each other, not doctors working in silos.

The VA thing is rough. We're still dealing with that too even though we're further along. Have you thought about getting a VA benefits advocate to help push it along? Sometimes it takes someone actually making noise.

How are you feeling about January and starting treatment?
Veteran
Yeah, 40 to 50 a year is exactly the kind of number I was hoping to hear. That's what I'm looking for with my oncologist now because right now it feels like she's just running me through the standard playbook. Did Joe's surgeon also talk you through what the chemo protocol would look like after surgery, or did they keep that separate? I'm trying to figure out if I should be looking for someone who coordinates the whole thing or if it's okay to have them more siloed.
Medical ✓ Expert Response
Volume is the thing that actually moves the needle here. The International Mesothelioma Program at Brigham and Women's published data showing that surgeon case volume is one of the strongest predictors of outcome in pleural procedures, and the threshold that kept coming up in the literature was roughly 50 or more mesothelioma-specific cases per year. Not thoracic cases generally. Meso specifically. That number is worth asking your surgeon to answer directly.

For the oncologist piece, what you described, the lung cancer protocol conversation, is a real flag. Meso has its own biology. The standard first-line after pleurectomy is typically pemetrexed plus a platinum agent, and how they manage dose adjustments post-surgery, especially watching kidney function and folate supplementation, is where meso experience actually shows versus general thoracic oncology. I'd ask them flat out how many patients they've managed through chemo following P/D in the last 24 months. If they have to think hard about the number, that tells you something.

I had a patient whose family drove from Phoenix to get a consult at a dedicated mesothelioma program and the team completely restructured the sequencing of treatment. The referring oncologist wasn't wrong exactly, just not calibrated for this disease.

The National Cancer Institute has a list of designated cancer centers and several of them have mesothelioma-specific multidisciplinary tumor boards, which is where the real conversation about your specific pathology, staging, and post-surgical margins gets reviewed by everyone in the room at once.

Please talk to your own oncologist before making any changes, because your post-op status matters enormously for what comes next.
3 found this helpful
Veteran
Yeah the 50 cases per year number is exactly what I needed to hear. My surgeon at Scripps said they do "quite a few" which is about as useful as my VA rep saying my claim is "being reviewed." I'm gonna push them for the actual number before I start chemo in January. And the oncologist thing, you cut off mid-sentence but I'm guessing you were gonna say something about asking them directly too. What were you gonna say on that part?
Medical ✓ Expert Response
What you're asking is exactly the right question and honestly a lot of people don't ask it until they've already lost time with the wrong team.

The volume question matters more than almost anything. When I was working with a patient at UCSD back in 2019 we pushed his referring oncologist on exactly this and found out she'd treated maybe 3 meso cases that year. Three. We ended up connecting him with the thoracic team at Moffitt and it was a completely different conversation from day one. They knew the pemetrexed plus cisplatin data cold, they understood the specific sequencing considerations after pleurectomy, and they weren't retrofitting lung cancer thinking onto a disease that doesn't work the same way.

So the questions I've seen work: ask how many pleural meso patients they managed in the last 12 months specifically, ask if they have a dedicated thoracic oncology team or if it's just a general medical oncologist covering meso alongside everything else, and ask whether they're tracking your case against any current trials. NCI-designated cancer centers are worth the drive because they tend to have tumor boards where multiple specialists are actually looking at your case together, not in silos.

The lung cancer protocol thing you mentioned is a real flag. The biology is different enough that it warrants its own approach, and a good oncologist will say that without you having to prompt them.

And on the VA claim... November isn't that long in VA time unfortunately but if you haven't already connected with a VSO who specializes in asbestos exposure claims, that's worth doing sooner rather than later. Persistent issues there really do benefit from having an advocate in your corner. Same with the medical side honestly, if the generic oncologist feeling keeps nagging at you, a second opinion from a meso specialist program is worth pursuing.
2 found this helpful
Veteran
Yeah three cases a year is basically a hobby, not expertise. That's exactly what I'm worried about with the guy at Scripps referral. I'm gonna push back and ask straight up how many mesothelioma patients he's actually treated in the last year, not just lung cancer. Did your patient end up doing the multimodal at Moffitt or did he go somewhere else? And was it worth the travel to Florida or are there solid thoracic teams closer that actually know meso protocol.
Patient
Yeah man, you're asking exactly the right stuff. I'm only a few months ahead of you so take this for what it's worth but the surgeon thing is real. My guy at Henry Ford has done like 200+ pleurectomys, I asked point blank and he didn't dodge it. That number mattered to me because I figured if something went sideways during surgery he'd seen it before. Your surgeon should know meso protocols specifically, not just "we do pleural stuff."

For the oncologist piece, I actually switched after my first consult. The first guy was throwing pemetrexed and cisplatin at me like it was standard issue for everything. My current oncologist at Karmanos actually had me meet with their meso tumor board before we even started chemo, like four doctors in a room talking through MY specific case. That felt different. They talked about dosing after EPP surgery, not just plugging me into a lung cancer playbook. Ask them if they've managed chemo in meso patients post-pleurectomy. If they get vague, that's a flag.

I did get a second opinion on the surgery from University of Michigan before I committed, cost me nothing and it took two weeks. Surgeon #2 basically said the same thing as surgeon #1 so I felt better about it. Not saying you need to do that but it helped my head.

The VA stuff sucks, mine's still moving slow too but that's a whole different beast. At least your oncology team doesn't have to wait on that to get rolling in January. Focus on getting the right docs first.

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