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picking a treatment center - what actually mattered for my surgery in Feb

Patient · · 55 views
So I had my EPP done at University of Michigan back in February and I gotta say, picking the place was way harder than I thought it'd be. Everyone kept telling me volume matters and yeah that's true but it's not the whole story.

First thing I did was ask my oncologist straight up which centers around here actually do this stuff regularly. Turns out most hospitals don't do EPP very much at all, so that narrowed it down fast. I called like five places and asked how many they do per year. UMich said around 20-25 pleural cases annually and they've been doing this for like 15 years. That felt solid.

But here's the thing nobody tells you, the surgeon matters more than you think. I got lucky and got Dr. Liptay and he's literally trained under the guys who invented the procedure. When I asked about his specific outcomes with stage I patients, he had actual numbers. Not vague stuff. That was huge for me.

I also asked about what happens after surgery. Like recovery support, follow up chemo coordination, all that. UMich had a whole team ready to go and they explained the entire plan before I went in. Other places I called were kinda vague about the after part which weirded me out.

The insurance thing too. Call and make sure they're in network or at least find out upfront what you're gonna owe. I didn't do this first and it was a headache later.

My advice is don't just pick the big name center. Pick the place that actually answers your questions and has a surgeon who's done hundreds of these, not dozens. And honestly call and talk to their patient coordinators. If they're helpful before surgery they'll be helpful after.

16 Replies

Patient
This is exactly the kind of detail I needed to see right now. I'm in that picking phase myself, Stage II peritoneal though so slightly different beast than your pleural case, but the principle holds. I've been looking hard at HIPEC surgery options and everyone throws around volume numbers like they're the whole answer.

Your point about asking the surgeon directly for outcomes data really resonates with me. I called Cleveland Clinic last week and when I asked about their surgeon's specific complication rates for Stage II peritoneal cases, they gave me this vague "we have excellent outcomes" response. Not helpful. I'm keeping a symptom journal going back to my November diagnosis and I want actual numbers to compare against what I'm reading in the literature, you know?

The after surgery piece is something I hadn't weighted heavily enough either. I've been so focused on the operation itself that I didn't think to ask how their oncology team coordinates with the surgical team on follow-up chemo timing. That's critical for peritoneal cases because the sequencing matters.

One thing I'm still wrestling with, did you have any specific conversations with their patient coordinators about what the first few weeks post-op actually looked like day to day? I'm trying to figure out if I need to line up help at home beyond what they're recommending and I want realistic expectations, not the sanitized version.
Patient
Yeah the peritoneal stuff is definitely its own thing but you're spot on that the basics don't change. And good call asking Cleveland Clinic straight up about complication rates, that's the question that actually matters. Did they give you solid numbers or did they kinda dance around it like some places do? Because that right there tells you if they're confident or just running a factory line.
Family
You know what I wish someone had told us earlier, ask about their timeline for getting you in. We called around in September when Joe got diagnosed and UMich could fit him in for the initial consult within two weeks, but some other places had a six to eight week wait. When you're looking at stage III like we are, that matters. Not saying you rush into a bad decision, but you also don't want to lose months while you're trying to schedule appointments.

And Patricia, I get the peritoneal thing being different but honestly the vibe of how they treat you before you ever step foot in an OR tells you everything. When Joe's patient coordinator at UMich called me back the same day with answers instead of making me chase people down, I just knew we were in the right spot. Some places felt like they were doing us a favor just answering questions, you know?

One more thing nobody mentions - ask them point blank what their infection rates are post surgery and what their readmission rate looks like. Not just survival stats. The messy recovery stuff. We got those numbers and it helped us sleep at night knowing what we were walking into.

How are you feeling about your options so far?
Patient
Yeah that timeline thing is real important, especially at stage III. Two weeks versus two months is a huge difference when you're trying to get moving on treatment. I didn't think about that much when I was looking around but you're right, some places just move faster than others. Did UMich end up being able to fit Joe in pretty quick once you called, or did you hit any delays after that initial consult?
Medical ✓ Expert Response
Building on what Carl said about complication rates, there's another layer worth knowing: ask specifically about their 90-day mortality data, not just the surgical complication numbers. Those are two different things and centers don't always volunteer the distinction.

The MARS 2 trial (published in Lancet Oncology, 2021) actually complicated the EPP vs. P/D conversation in ways that are still being worked out, and a center that can speak to that literature fluently is going to manage your post-op course differently than one that can't. So I'd ask the surgeon directly where they land on the EPP vs. pleurectomy debate for your specific stage. If they have a thoughtful answer, that tells you a lot. If they just say "we do both," keep asking.

And the multidisciplinary piece you mentioned, having chemo coordination locked in before you even go under, that's not just logistical convenience. The data on trimodality therapy outcomes is pretty clear that delays between surgery and adjuvant treatment affect things. Your UMich experience sounds like they understood that.

Talk to your own oncologist about all of this, every case is different.
3 found this helpful
Patient
Yeah that MARS 2 stuff is exactly what my surgeon walked me through before I signed off on EPP. He didn't shy away from it either, just laid out what the data actually showed and why he thought EPP was still the right call for my specific situation. That's kinda what I mean about picking someone who knows their stuff and doesn't just have a standard pitch, you know?
Family
Yeah the surgeon piece is huge, we learned that the hard way. My dad's oncologist actually recommended someone specific and it made all the difference in how his palliative plan got set up, so definitely don't sleep on asking your doctor who they'd actually want operating on them.
Veteran
Yeah that surgeon piece is huge, I learned that the hard way with my VA docs. Good on you for asking the hard questions upfront instead of just getting shuffled around like most of us do.
Patient
That surgeon pedigree thing is exactly what I'm trying to figure out right now with HIPEC centers. Did you ask Dr. Liptay about his specific complication rates for peritoneal cases, or just the general outcomes?
Family
This is such good advice and honestly your point about the surgeon's experience is something I wish my dad's oncologist had emphasized more upfront. We ended up at Northwestern and while they're a major center, I spent way too much time early on comparing volume numbers when what really mattered was talking to the actual team who'd be doing the procedure.

The after-surgery coordination thing really resonated with us. My dad had his EPP back in the spring and the difference between centers became crystal clear once we started chemo. Northwestern had everything mapped out, pathology reports flowing to oncology, pain management already briefed on his case before he even left recovery. When I called around beforehand like you did, one hospital literally couldn't tell me who'd be managing post-op pain which felt like a massive red flag to me.

One thing I'd add that nobody talks about: ask about their infection protocols and ICU staffing. Pleural mesothelioma patients post-EPP are vulnerable to complications and you want to know that if something goes sideways at 3am, there's actually a thoracic surgeon available, not just an on-call resident. We asked that specific question and it mattered.

Also the insurance piece, yeah. Call your insurance company directly, not just the hospital billing department. We got two different answers and the insurance company's number was the accurate one. Saved us from a nasty surprise bill in June.

How's your recovery going now that it's been a few months? The pleural space management must be settling down by now.
Medical ✓ Expert Response
This is such a thorough writeup and I hope it helps people who are just starting to figure this out. The volume question is something we talk about a lot in our support groups and you put it really well, it's not just the center, it's the specific surgeon's hands-on experience with this procedure.

One thing I'd add from working with patients over the years, asking about the multidisciplinary team coordination before surgery is something a lot of people forget to do until they're already in it. The centers where the thoracic surgeon, oncologist, and pulmonologist are actually talking to each other regularly... you feel the difference. Research from the National Mesothelioma Virtual Bank has shown that outcomes at high-volume specialty centers can differ significantly even when comparing similar-stage diagnoses, so the instinct you had to dig into specifics was exactly right.

The insurance piece is real. We had a patient in our Wednesday group at U of M's cancer care clinic who didn't call ahead and ended up facing out-of-network costs that were genuinely staggering. That phone call takes maybe 20 minutes and it matters so much.

And for anyone reading this who's feeling overwhelmed just trying to figure out where to even start, that feeling is completely normal. If it starts to feel like too much to carry alone, talking to an oncology social worker at the center you're considering can help. That's actually what we're there for.
3 found this helpful
Veteran
Got my EPP at Balboa Naval Medical Center back in January, so we're in the same boat timing-wise. You nailed it on the surgeon piece. I spent three weeks calling around San Diego and LA and most places either didn't return calls or gave me the runaround. Found out real quick that not every cancer center does this stuff regularly.

My oncologist at VA actually gave me the same advice you got, narrowed the field down to maybe three places that do 15-20 of these a year minimum. Balboa had a thoracic surgeon who'd done over 200 EPPs and that was the deciding factor for me honestly. The numbers matter but yeah, experience matters more. I'm not gonna be part of somebody's learning curve on this one.

The after-surgery coordination thing you mentioned is so important and nobody talks about it. Balboa had me scheduled for chemo rounds before I even left recovery. My VA oncologist and the surgical team were talking to each other which sounds basic but apparently doesn't happen everywhere. I've talked to other guys on here who got surgery at places where nobody told them what was next and they just kinda fell through the cracks for weeks.

Insurance was a nightmare for me too. Took me two months to figure out what I actually owed versus what VA covered. Call your benefits office early, don't wait like I did.

You picked a good spot. UMich's got a solid reputation and Liptay's name came up when I was doing my research. How's the recovery going so far?
Patient
Man, this is gold. I'm sitting here 4 months post-EPP at UMich and yeah, everything you said tracks. That whole "volume matters" thing is like saying you need a good mechanic but not telling you that a good mechanic who knows YOUR car is what actually saves you money and headaches.

I did almost the exact same thing. Called around, asked the numbers, got the runaround from a couple places that made me feel like I was bothering them. Then I got Dr. Liptay's team on the phone and they were straight with me about everything. No BS, no trying to oversell it. Just facts. That's when I knew.

The recovery coordination piece is what really got me tho. They had chemo lined up before I even left the hospital in February. My oncologist was already talking to the surgery team, everything was connected. I've heard from guys on here who had their surgery at places that didn't communicate worth a damn and then they're scrambling to find someone to do chemo. That's a nightmare you don't need when you're healing up.

And yeah insurance upfront, that's the voice of experience talking. I should've done that first call instead of last. Would've saved myself some phone time in April trying to sort out what I actually owed versus what insurance was gonna cover.

Good call on the patient coordinators thing too. Mine was named Sarah, called me like three days before surgery just to check in and make sure I had all my questions answered. That kinda stuff tells you everything about how a place operates.
Veteran
Got my pleurectomy at Naval Medical Center Portsmouth back in August after the VA caught mine at routine screening. Didn't have the luxury of shopping around much like you did, N., but I learned real quick what matters.

You nailed it on the surgeon piece. My thoracic guy, Commander Patterson, had done probably 300 of these over his career. When I asked him point blank about my odds with Stage II he didn't sugarcoat it but he had the data. That matters when you're signing consent forms at 0600 in the morning.

The after care thing you mentioned is dead on. UMich sounds like they had their act together. Portsmouth had a solid recovery team but honestly the coordination with oncology was spotty at first. Had to do some chasing myself to get chemo lined up for September. Took a couple phone calls to the right people but we got there.

One thing I'd add, the patient coordinator can make or break your experience. Mine was a former corpsman named Rodriguez and she basically walked me through everything pre-op and post-op. When I had questions about drains or when I could get back to light duty around the house, she answered straight up. Not all coordinators are created equal so yeah, talk to them before you commit.

Insurance piece bit me too. Found out after the fact that some of my imaging wasn't covered the way I thought. Call ahead and get it in writing if you can.

You're doing the right thing asking the hard questions upfront. Most guys I know with this don't and they regret it.
Patient
Yeah man, 300 cases, that's the kind of experience you want holding the scalpel. Sounds like you got lucky with Patterson even without the shopping around part. And good on the VA for catching it early at that screening, that's huge. Did he give you a timeline on the chemo after, or are you still working that part out?
Medical ✓ Expert Response
This is really well thought out advice and it tracks with what the literature shows. The IASLC published data a few years back showing that EPP outcomes correlate strongly with institutional volume, but you're right that volume alone doesn't capture the full picture. Surgeon-specific experience matters enormously for a procedure this technically demanding.

The thing about asking for actual numbers on outcomes... I've seen patients get vague reassurances from centers that frankly weren't doing enough of these to have real data. If a surgeon can't give you their own morbidity (complication) numbers for EPP, that's information too.

And the multidisciplinary piece you mentioned, coordinated chemo follow-up being planned before you even went in, that's the standard at the places consistently showing better results. It's not just nice to have. The MARS trial and subsequent data have made clear that perioperative (before and after surgery) planning is where a lot of centers fall short.

The insurance call piece I can't emphasize enough from what I've seen patients go through. One patient I worked with found out two weeks post-op that her center was out of network and the bill was genuinely shocking. February is a rough time of year for that too since deductibles reset in January.

Glad you're on the other side of it. Talk to your oncologist about any concerns as your follow-up plan continues, but this writeup is going to help people who are earlier in this process than you were.
3 found this helpful

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