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what actually matters when picking a treatment center - skip the BS

Patient · · 537 views
So I'm about 3 months out from my EPP at Henry Ford and doing pretty good, but I wish I'd asked better questions before I picked them. Figured I'd throw down what I actually looked at because a lot of the stuff online sounds fancy but doesn't mean squat.

First thing, surgeon volume. Not the hospital's volume, the actual surgeon's volume doing EPP or your specific procedure. I asked Dr. Patterson how many he'd done in the last 5 years and he said 47. That mattered to me. Hospitals will tell you they do 100 a year but that might be spread across 8 surgeons, so one guy's only doing like 12. That's different.

Second was whether they do multimodal and if chemo and radiation are actually in house or if you're getting shuttled around to different places. Henry Ford does it all on site which was huge for me because honestly I'm tired enough without driving all over Detroit for different appointments.

Third thing nobody talks about is what happens if something goes wrong during surgery. Do they have a cardiac surgeon on staff, a thoracic ICU, all that. I didn't ask and I probably should've.

Also ask about their 5 year survival rates but understand that's gonna be skewed because they probably treated a bunch of early stage guys like me. Stage 1 and 2 patients pull those numbers way up. Ask what their stage breakdown is.

One thing that helped was calling patients they'd treated. My oncologist gave me a number of a guy who had EPP 2 years ago and he told me straight up about the recovery, what hurt, what they could've done better. That was worth more than any pamphlet.

Insurance stuff matters too. Call their billing department and ask if they're in network with your plan. I know a guy who got great treatment but his insurance fought them on some stuff because they were out of network, made the whole thing messier.

I'm not saying Henry Ford is the only good place or anything, but doing the work upfront would've saved me some stress. And honestly if you're stage 3 or 4 you probably want to look at the big academic centers, not just your local hospital.

9 Replies

Family
This is such solid advice and I'm glad you're doing well post-op. Your point about surgeon volume is exactly right, and it's something I see get glossed over constantly. When my dad was first diagnosed in March, I made that same call to his thoracic surgeon at Northwestern and asked the exact same question. He'd done 62 EPPs in the prior five years, which felt reassuring given my background in healthcare, but honestly that number only matters if the outcomes back it up.

The multimodal thing hit different for us because my dad's stage IV meant surgery wasn't on the table, but we were coordinating chemo with palliative radiation and having it all in one place made such a difference when we moved him to palliative care in October. Fewer moving pieces meant fewer chances for miscommunication between teams.

One thing I'd add based on what we've navigated: ask about their supportive care infrastructure. Like, do they have oncology social workers, nutritionists, palliative care integrated from the start? My dad's team at Northwestern actually had a palliative care specialist sitting in on treatment planning meetings from month two, and even though we eventually transitioned fully to palliative in the fall, having that voice in the room early changed how we approached everything. It's not flashy like "we have the latest imaging" but it matters so much for quality of life during treatment.

And yeah, calling former patients is gold. That one conversation will tell you more than any marketing material ever will.
Medical ✓ Expert Response
This is genuinely one of the best breakdowns I've seen posted here, and I want to add a few things from the clinical side since surgeon volume is something we actually track pretty carefully in the literature.

The Batirel study out of Turkey looked at EPP outcomes across centers and found that centers doing fewer than 10 procedures per year had significantly worse 30-day mortality. That lines up exactly with what you're saying about individual surgeon volume. The hospital number is marketing. The surgeon's personal case log is what actually tells you something.

The cardiac backup question you mentioned wishing you'd asked, that one really matters. EPP carries real risk of intraoperative cardiac events because of how much the mediastinum (the central chest cavity) gets handled. Asking whether a cardiac surgeon is physically reachable during your procedure is completely reasonable and any good center won't blink at the question.

One thing I'd add for people reading this at stage 3 or 4... some of the big academic centers have expanded resectability criteria since 2020. What got turned down at a community hospital has sometimes been reconsidered at a place like Brigham, Moffitt, or MD Anderson. I had a patient in early 2023 who was told she wasn't a surgical candidate locally, flew to Houston, came back with a different answer entirely. Not saying that happens every time but it happens enough.

The survival rate breakdown by stage you mentioned is so underappreciated. Always ask for stage-specific data, not pooled numbers.

Talk to your own oncologist about any of this before making decisions, every case is genuinely different.
3 found this helpful
Veteran
Yeah, this is solid advice. I did some of that legwork with the VA before my surgery in December and it made a difference.

Got my diagnosis October, filed my VA claim November and I'm still waiting on that to process, which is its own special hell. But while I was doing that I also reached out to some civilian centers because the VA timeline wasn't moving. Ended up doing my EPP through my VA benefits but I asked the same kind of questions you're talking about. The VA surgeon had done over 60 EPPs in the last 4 years. That number mattered to me because I knew I wasn't gonna be a learning case, you know.

One thing I'd add from the military side of things is don't assume your VA hospital has the full setup. I'm in San Diego and we've got a decent facility here but I confirmed they had thoracic ICU, cardiac backup, the whole nine yards before I committed. Some VA places are smaller and they'll send you out for complications. That's not acceptable when you're already compromised from surgery.

The multimodal thing you mentioned is huge. Recovery is brutal enough without bouncing around to three different places for your treatment phases. I'm three months out from surgery like you and some days I'm still dealing with pain and fatigue. If I'd had to drive across the county for chemo appointments on top of that it would've been worse.

Also talk to them about what their protocol is for guys with military asbestos exposure. I was exposed at Camp Lejeune from 78 to 82 and then again on the Iwo Jima. The good centers know that exposure history matters for prognosis and they adjust their approach. Some places don't ask enough about it.
Medical ✓ Expert Response
This is genuinely one of the best posts I've seen on this forum. Glad you're three months out and doing well.

The surgeon volume point is something I bring up with every patient I see considering surgical resection (removal of the tumor and surrounding tissue). The IASLC published data a few years back showing outcomes for EPP specifically correlate much more tightly with individual surgeon experience than institutional volume, and yet families almost never think to ask that question. 47 cases in 5 years from a single surgeon is actually a reasonable number for a procedure this specialized.

The survival rate caveat you raised is something I wish more patients understood before they start comparing centers. Stage-adjusted survival is what you want. I had a patient last year who almost chose a center based on their headline numbers and when we dug into it together, the case mix explained almost everything. Their stage 3 and 4 outcomes were actually worse than a center with lower overall numbers.

The cardiac backup question is huge and you're right that almost nobody asks it. Pericardial (heart sac) complications during EPP are rare but they happen, and you want to know the answer before you're on the table.

One thing I'd add for anyone reading this: ask specifically whether the multidisciplinary tumor board reviews your case before surgery, not after. At Brigham and Women's they've had a dedicated mesothelioma program since the late 1990s and that board structure is part of why referrals there changed outcomes for patients I've sent.

Talk to your own oncologist about any of this, of course. Every case is different.
3 found this helpful
Patient
Yeah man this is solid stuff. I'm at Henry Ford too, had my EPP back in February with Dr. Patterson actually. 47 procedures in 5 years sounds about right, he's got that real steady hand you know. The guy's done enough of em that it's basically muscle memory at that point.

The multimodal thing is huge. I was dreading getting bounced around to three different places for my tune-up chemo and radiation but having it all in one spot meant I could basically roll outta bed and be there in 20 minutes. Saved my wife from driving me all over creation too which honestly matters more than people think when you're feeling like garbage.

That cardiac surgeon thing you mentioned, yeah I should've asked about that too. Didn't even cross my mind until after. Good catch. Recovery went better than I expected tho, been back doing light stuff around the house and the docs seem pleased with how my lungs are handling it so far.

One thing I'd add is ask about their patient navigator program if they got one. Henry Ford assigned me this lady named Michelle who basically walked me through every step, helped with insurance questions, made sure I knew what to expect. That kinda stuff sounds small but when you're scared and confused it's worth its weight in gold.

And yeah calling actual patients is clutch. The guy I talked to told me straight about how bad the pain gets post op, what meds actually worked, stuff the pamphlets gloss over. Made recovery way less of a shock.

You're doing the right legwork upfront. Beats scrambling later.
Veteran
One thing that bit me in the ass with the VA side of this is they don't always know what centers are "approved" for their claims until after you've already picked one. I went through the VA hospital first, got bounced around, then ended up at a civilian center for my surgery in December. Took forever to get them to cover it retroactively. If you're using VA benefits, call the VA hospital's oncology department directly and ask which centers they have agreements with. Don't just assume your local VA hospital is your only option because it's not, but you gotta do the legwork upfront or you'll be fighting paperwork while you're recovering.

Also what the original post nailed that most people miss: ask about what happens if complications show up mid-surgery. I asked about that at my consult and found out they had cardiac and thoracic ICU coverage, which mattered because I had some irregular heartbeat stuff going in. That wasn't on any of their marketing materials but it was the question that made me feel like they actually thought through worst case scenarios instead of just the textbook cases.
Patient
I'm keeping this thread bookmarked because I'm doing the same surgeon volume research right now before my HIPEC consult next month. Did you ask Dr. Patterson specifically about his complication rates or did Henry Ford just volunteer that info?
Family
The in-house multimodal thing is huge and I wish I'd understood it better before dad started treatment. We're doing trimodal at Northwestern and having everything coordinated in one place meant his oncologist, radiation team, and palliative care doc could actually talk to each other in real time instead of playing phone tag. I watched families at other centers get bounced around to three different buildings and honestly the logistics alone add stress when you're already managing someone on palliative care.

One thing I'd add though that nobody mentioned yet is asking about their palliative care integration from day one, not just at the end. We didn't get that conversation until October when dad transitioned off aggressive treatment and I regret it. His team at Northwestern got way ahead of symptom management once we had that talk but we could've been doing some of that work earlier. If you're stage 3 or 4 like your OP said, ask how they handle pain management and quality of life stuff during active treatment. It's not either-or.

And yeah, calling former patients is gold. We did that too and one guy told us stuff about managing pleural effusions at home that our discharge paperwork never mentioned. That phone call saved us probably three ER visits.
Patient
Yeah that phone tag stuff is exactly what I was trying to dodge, and sounds like your dad lucked out with Northwestern coordinating it all. The real thing is when everyone's in the same building they actually know what the other guy did that morning instead of finding out a week later, you know? That's not just convenience, that's actual better care. How's your dad doing with the trimodal, is he tolerating it alright?

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