finding a doc who actually knows multimodal treatment - not just surgery or chemo

That Oriskany comparison is perfect, honestly. We ran into the exact same thing when Joe's immunotherapy started in November and his oncologist at Moffitt basically said "okay, now you need radiation" without actually talking to the radiation doc about his baseline lung function or what the chemo had already done to him. Like, they're in the same building but I'm sitting there thinking nobody's reading the same playbook.

What actually made the difference for us was asking each specialist directly, "Walk me through what you're planning if X happens during treatment." Not just the happy path, but what if he gets a bad reaction, what if scans show something unexpected between phases. The teams that hesitated or gave vague answers... yeah, those weren't the ones coordinating. The good ones could tell us exactly how they'd adjust, and they actually knew each other's cases already.

We ended up picking based partly on whether the tumor board actually meets regularly. I straight up asked the scheduler when their next meso case conference was and whether Joe's case would be there. Sounds small but it tells you everything about whether they're really working together or just occupying the same hospital.

One thing though - don't assume the big name place is automatically doing it better. We drove past two major centers to work with a smaller team that actually had a written protocol they'd used on previous cases. They showed us the actual thing, not just talked about it.

How far are you willing to travel for the right team?

This is such a smart question and yeah, the coordination piece is everything. When my dad started palliative care in October after his initial chemo failed, I realized the oncology team and the palliative care team literally weren't on the same page about his performance status or what his goals even were anymore. They weren't communicating.

What actually helped us was asking each specialist point blank: "Walk me through what happens after you finish your part. Who initiates the next phase and when?" Not "do you work together" but literally the mechanics of the handoff. At Northwestern where we ended up, the medical oncologist had a standing meeting every other Thursday with the thoracic surgeon and radiation oncologist. Not just a consult, an actual standing meeting. That was the signal that this wasn't just three smart people in proximity.

Also ask about their case volume specifically for pleural cases with the exact staging as yours. We got told one place did "lots of multimodal mesothelioma" but when I dug in, most of their cases were peritoneal and their pleural numbers were way smaller. The difference matters because pleural has different dose tolerances, especially for the heart.

And honestly, your medical background is going to help here. You can ask about dose modifications based on surgical findings in a way most patients can't. Use that. Don't apologize for being detailed in your questions.

Oh man, this is exactly what I've been trying to figure out too. My mom had her pleurectomy back in August at Banner in Phoenix and then we spent like two months just... waiting. And I'm sitting there thinking the same thing you are because nobody seemed to be on the same page about what comes next.

So we finally got her scheduled for follow-ups with both the chemo oncologist and the radiation team but they had different appointments three weeks apart and I'm like, shouldn't you guys have talked already? I actually called the hospital coordinator and asked specifically how many mesothelioma patients they've treated with the full multimodal approach in the last year. They gave me a number but honestly it wasn't that high, which made me nervous.

What helped was asking to sit in on a pre-treatment planning meeting where all three specialties were actually in the room at the same time. Not separately. Like, the surgeon who did her pleurectomy, the chemo doc, and the radiation oncologist all looking at her scans together and talking about timing and dosing. We had to push for that meeting but it made such a difference because suddenly I could see them actually problem-solving together instead of just doing their individual thing.

And yeah, ask about their protocol. Like literally say "what's your standard sequence for someone in this stage" and see if they have an actual written plan or if they're kind of winging it. We're not Navy people but I get what you mean about needing people who train together.

It's exhausting trying to be the person connecting all the dots when you're already overwhelmed...

Joe's team at Moffitt in Tampa actually sat down with us back in January and walked through their whole protocol like they were teaching a lesson plan. They literally had a binder with their cases from the last five years, and you could see how they adjusted chemo doses after his pleurectomy because the surgeon's notes flagged some adhesions that changed their approach. That's when I knew we were in the right place.

What really helped us was asking "what happens if X changes the plan" type questions. Like what if he doesn't tolerate the first round of chemo as well as expected before radiation starts? They had answers ready because they've actually had to make those calls before, not just theoretical stuff. We also asked to talk to someone who'd already been through their protocol, and they connected us with another patient. That conversation was gold.

The thing about teaching for 30 years is you learn that a good team has rhythm. Everyone knows their role and when to hand off to the next person. At a real multimodal center they should be able to tell you specifically how many mesothelioma cases they've done with surgery then chemo then radiation in that order, and they should be honest about which part of the combo they're strongest at. Some places are amazing surgeons but their radiation team is just okay, you know?

Your Oriskany reference actually nails it. You want people who've trained together on this specific thing, not just colleagues in the same hospital. Ask them if the surgeon, oncologist, and radiation doc actually review cases together as a group. If they hesitate or say "well they have access to the same records" that's a red flag.

How far are you willing to travel for treatment?

That damage control analogy hits different because you're exactly right. I had my pleurectomy in December at Scripps here in San Diego and spent the next couple months trying to figure out who was actually gonna coordinate the follow-up. My oncologist and the radiation doc literally didn't talk to each other about sequencing until I asked point blank at an appointment.

What actually worked for me was calling the tumor board coordinator at a couple of the bigger centers and asking them straight up how many pleural meso cases they'd done with surgery plus chemo plus radiation in the last two years. Not just individually but as a coordinated plan. The place that gave me a real number, like "we've done 14 in the last 18 months and here's our standard protocol," that's where I ended up going. They had a meeting scheduled before my chemo even started to map out the whole thing including radiation timing and dose considerations based on my surgical findings.

VA claim process note since you're dealing with Norfolk VA: get copies of everything from EVMS right now, not later. I waited and it slowed down my VA paperwork by two months. When you're talking to these treatment centers ask if they work with VA patients regularly because some places have a whole separate process for getting your records to coordinate with the VA system.

One thing nobody told me to ask: do they adjust chemo doses if surgery was more extensive than planned. Ask that. I had more pleural stripping than expected and my first chemo cycle got modified based on that. Teams that actually talk to each other anticipate this stuff.

Got my pleurectomy in December at Scripps here in San Diego and I'm basically where you are now trying to figure out the next phase. Your Oriskany analogy is spot on, that's exactly what I'm looking for too.

When I was at Camp Lejeune back in 78 to 82 the asbestos was just everywhere in the barracks insulation, nobody knew what we were breathing. Fast forward and now I'm trying to make sure the docs treating me actually have their act together instead of playing telephone tag with my case.

I asked my team straight up how many pleural meso cases they've done with surgery then chemo then radiation in that order, and the oncologist literally pulled up their database and showed me numbers from the last three years. That was a good sign. They had a tumor board meeting scheduled for my case specifically which meant surgeons, chemo oncologist, and radiation oncologist all in the same room looking at my scans and my OR report before anyone started treatment. Not just handing me off.

The thing that made the difference for me was asking about timing. Like how many weeks after surgery before chemo starts, and does radiation happen during chemo or after, and who adjusts doses if something goes sideways. Places that had to call other departments to answer those questions are not your answer. Places that knew the answers already had protocols.

VA's still dragging their feet on my claim filed in November but my Scripps team isn't waiting on that, which I'm grateful for. Ask if they've got experience with VA patients too because some centers know how to work with the VA paperwork side better than others.

I'm in the same evaluation phase right now, actually diagnosed just last month with peritoneal and I've been doing exactly what you're doing, asking the hard questions about how these teams actually coordinate. The Oriskany reference resonates because you're right, it's not about having good people in the same hospital, it's about whether they've done this dance before.

When I talked to the surgical oncology team at Cleveland Clinic back in December, I specifically asked how many peritoneal cases they'd done with their exact protocol that year. They said 14. Then I asked if the surgeon sits in on chemo planning and the medical oncologist was actually in the room when they discussed my scan results. The answer was yes for both, which already felt different from my initial consultation where I got handed off like a file. So I started asking about their HIPEC protocol specifically since that's what they're recommending for me. Are they using mitomycin or doxorubicin, what's their dosing, how do they adjust if there's unexpected peritoneal involvement found during surgery. The surgeon actually pulled up their institutional data from 2023 showing outcomes by dose and timing of chemo.

What I learned is the real teams have written protocols. They can show you the document. They know the answer to "what happens if we find more disease than the imaging showed" without having to call someone else. I also asked for a phone call with the medical oncologist before committing, not just an appointment, because I wanted to hear how they talk about the surgery and what information they need from the OR report.

One thing that surprised me: ask them about their complication management too. Like, what's their plan if you develop a bowel perforation during HIPEC or if your kidney function drops after chemo. The places that have been doing this have answers. The places that don't will tell you they'll "deal with it as it comes."

Are you leaning toward peritoneal or pleural for your next phase? That might change which centers actually have the volume you need.