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picking a treatment center when youre stage 2 - what actually mattered to me

Patient · · 82 views
So I had to make this call back in December when I got my diagnosis and it was kinda overwhelming because there's Mayo and then there's like ten other places all saying they're the best and I'm sitting there in my living room in Detroit trying to figure out which one doesn't just want my money.

First thing I did was call around and ask who does EPP surgery. Not just "do you do it" but like, how many are they doing a year. The guy at my surgeon's office said Dr. Sugarbaker's team was doing like 80 to 100 a year and that stuck with me because I figured if you're doing that many, you probably know what you're doing, right. Like back at the shop we'd always go to whoever had the most experience with your particular problem.

Second thing was asking about multimodal treatment. Can they do surgery AND chemo AND radiation all in the same place or are you gonna be bouncing around to three different hospitals. That matters because you don't want your records getting lost or your timing getting screwed up between treatments.

Also asked straight up what the complication rate was and what their follow-up protocol looked like. Some places wanted to see me every three months, some every six. I wanted the aggressive one because I'm only stage one right now and I wanted to catch anything early.

One thing nobody tells you is ask if they have a meso specific nurse or coordinator. Mine's named Janet and she's worth her weight in gold because she knows the whole timeline and can answer dumb questions without making me feel like an idiot.

Honestly the biggest thing was trust. I talked to my regular oncologist and he said "go here" and that was kinda it. You gotta feel like they're not just running you through the machine.

8 Replies

Medical ✓ Expert Response
Everything you described here is exactly the right way to approach this and I want to add a few things from the clinical side that might help others reading this thread.

The volume question is huge. There's actually published data on this, the Flores et al. study out of Memorial Sloan Kettering found that surgical mortality for EPP (extrapleural pneumonectomy, the surgery where they remove the lung, lining, and nearby tissue) dropped significantly at centers doing more than 30 cases per year. 80 to 100 is genuinely elite territory. You were asking the right question.

The multimodal coordination piece is something I see patients underestimate all the time. When your surgeon, medical oncologist, and radiation oncologist are in the same tumor board reviewing your case together on a Thursday morning, that's a completely different experience than faxing records between three separate institutions. I've seen treatment delays of three to four weeks happen just from coordination failures between facilities, and for mesothelioma that timing actually matters.

The nurse coordinator thing, honestly cannot overstate this. Janet sounds like a unicorn but good programs invest in these roles specifically because the complexity of multimodal treatment is too much for a patient to track alone.

One thing I'd add for anyone reading this who's still shopping around, ask the center how many mesothelioma cases specifically they see per year, not just thoracic cancer cases generally. The numbers can look very different.

And obviously, talk to your own oncologist before making any decisions based on what you read on a forum, including from me.
3 found this helpful
Family
You're hitting on something really important here and I'm glad you laid it out like this because when Joe got diagnosed I was totally lost in all the options too. We ended up at Moffitt down here in Tampa and honestly the thing that sealed it for us was exactly what you said about having one place do everything. They coordinated his surgery consult with the chemo oncologist right there in the same building, same day almost, and it meant his scans didn't get repeated and nobody was working off old information.

The surgeon there told us straight up his complication rates and didn't sugarcoat anything, which honestly I needed. I was a teacher for 32 years so I'm used to people not being totally honest with you about the hard stuff, and I could tell when someone was being real versus selling. That matters so much.

Janet sounds amazing by the way. We have someone similar and yeah, she's the one who actually explains things in a way that makes sense instead of just rattling off medical stuff. Joe calls her between appointments when he's worried about something and she'll text back within an hour. That kind of access changes everything.

One thing we did that maybe helped is we asked about their immunotherapy protocols specifically since that's what Joe ended up doing starting in November. Some places were still doing older chemo combos and others had moved to the newer stuff, and we wanted to know what their data actually looked like, not just their brochure. It's the difference between feeling like you're getting cutting edge care versus feeling like you're an experiment.

How's your treatment plan shaping up so far?
Patient
Man you nailed it. I went through the same thing back in February when I was picking my spot. The EPP thing was huge for me too because I wanted someone who wasn't gonna be figuring it out as they go along, you know. Like taking your car to a shop that does your particular model all day versus some general mechanic.

I ended up at a place that does the whole three-ring circus in house and honestly that made a difference. Had my surgery in February, started the chemo tune-up right after without having to coordinate with some other hospital across town. My coordinator Sarah caught a scheduling conflict between my radiation and my follow-up labs that could've pushed everything back weeks. Those people are worth every penny they don't cost you.

The follow-up thing is real too. I'm doing every three months right now and yeah it's a pain to drive in for appointments but I figure early stage is the time to be paranoid about it. Better to catch something at month four than month seven.

One thing I'd add is ask them straight up what happens if something goes wrong. Like what's their revision rate, do they have to send you somewhere else, all that. And yeah call your regular doc and see what they think. Mine was honest about where the best outcomes were and that mattered more to me than any marketing material they could send me.

Hang in there with the decision. You're asking the right questions.
Medical ✓ Expert Response
This is such a thoughtful breakdown and honestly I wish more people asked these questions before they picked a center. The volume question especially... when I was working with a patient in Cleveland back in 2019 he almost went with a hospital that was doing maybe 8 to 10 EPP procedures a year and we talked through why that number mattered. Research consistently shows outcomes improve significantly at high-volume centers for complex thoracic surgeries, and mesothelioma is about as complex as it gets.

The Janet thing is real. A dedicated coordinator can honestly make or break the whole experience because the coordination between surgery scheduling, chemo timing, and radiation windows is so tight. One of my patients described it as trying to conduct an orchestra where nobody can hear each other, and having that one person who knows the whole score changes everything.

The trust piece you mentioned at the end... yeah. That's the part that doesn't show up on hospital websites. I sometimes suggest people journal after their first consultation, just write down how they felt walking out, not what was said but how they felt. That gut response often knows something your brain is still processing.

If anyone reading this is still in that decision phase and feeling overwhelmed, talking with an oncology social worker at the center you're considering is worth asking about. Most NCI-designated cancer centers have them on staff. And for anything that feels persistent or heavy, please reach out to a licensed counselor who specializes in cancer support, because that weight deserves real attention.
3 found this helpful
Patient
Yeah that Cleveland thing is exactly what I mean, thanks for bringing that up. I didn't want to sound like I was throwing shade at smaller hospitals but when you're talking about your lungs and your life, volume matters and I'm glad someone in the medical world is saying it out loud. My surgeon told me straight up that doing it over and over again means he knows how to handle the weird stuff that can pop up mid-surgery, and that made sense to me.
Veteran
Yeah, that nurse coordinator thing is huge. Mine's been handling all the VA paperwork headaches while I'm dealing with post-surgery stuff, saves me from losing my mind.
Patient
Yeah man, the VA stuff on top of everything else would drive me nuts. Sounds like your coordinator's earning her paycheck. How far along are you post-surgery now, couple months out?
Patient
Man you nailed this. I did basically the same thing back in December when I got my diagnosis and honestly the "how many are they doing a year" question was huge for me too. I called around and ended up at a place that was doing like 60-70 EPPs annually and my surgeon had been doing them since the late 90s. That mattered.

The multimodal thing is real. I got lucky because my team could do the EPP in February, then line up chemo right after at the same hospital. No shuffling records around, no explaining my whole situation three times to different doctors. Just one crew that knew exactly where I was in the process.

One thing I'd add is don't be shy about asking for their complication rates and then ask to talk to someone who's been through it. I got connected with another guy who had the same surgery at the same place six months before me and he walked me through what recovery actually looked like versus what the pamphlets said. Pamphlets say "return to normal activities in 4-6 weeks" but the guy told me he was still kinda beat down at week 8 and that's normal. Helped me set real expectations.

Also yeah the coordinator thing. Mine's been incredible about calling ahead to chemo appointments and making sure all my scans are where they need to be. Worth more than gold honestly.

Sounds like you're in good hands with whatever you picked. That trust piece you mentioned is everything.

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