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how to actually pick a treatment center - surgery vs chemo vs both

Patient · · 524 views
So I'm about 4 months past my EPP surgery right now and I gotta say picking where to do it was the scariest part. Not the surgery itself, that part I could handle, but finding the right place.

I went to University of Michigan for the EPP back in February. Got referred there by my oncologist at Beaumont and honestly that made all the difference. The thing is, not every hospital does this stuff regularly. You want a place that does a bunch of these surgeries every year, not like one or two. When I talked to the surgeon before we went in, he'd done like 40 of these the year before. That matters.

What nobody tells you is that the surgery and the chemo after are kinda like a one-two punch and you need them coordinated. My surgeon and oncologist literally talked to each other about timing and what chemo regimen would work best after the EPP. So don't just pick a surgeon and a chemo place separately. Find somewhere that does the whole thing or at least has good communication between teams.

Also check your insurance before you pick the center. I know that sounds dumb but I'm serious. Call them up and ask which places are in network for major procedures. I didn't do this first and nearly got stuck with a bill that would've been rough, even though we got it worked out. Ask about your deductible and what you're gonna owe out of pocket. It's not the fun part but it's real.

And honestly talk to people who've been through it at that specific center if you can. Ask on here, ask your doctor if they know patients who went there. The bedside manner stuff matters when you're gonna be in recovery for weeks.

9 Replies

Patient
This is exactly where I am right now, so your post hit home. I'm Stage II peritoneal and my oncologist at Cleveland Clinic is pushing me toward HIPEC surgery, which is different from EPP but same principle I think - you want specialized centers. I've been researching like crazy and keeping notes on which hospitals actually do this regularly.

The insurance thing you mentioned, yeah. I called my provider three times last week to understand what peritoneal debulking with HIPEC would cost me and got different answers each time. Finally got transferred to someone who actually knew what the procedure code was. Turns out my deductible resets in January so timing matters for me financially too.

I worked at Johns-Manville from 1978 to 1985, so I've had a lot of time to think about what got me here. That's made me real focused on getting this right the first time. I've been reading some of the ASCO literature on coordinated multimodal therapy and it's clear the surgeon and chemo team need to talk. That part scares me honestly because coordinating between institutions is harder than it sounds.

Are you doing additional chemo after your recovery period or was it just the regimen after surgery? I'm trying to understand the full timeline because my symptom journal shows the abdominal pain is getting worse and I want to know if I should be pushing to get on a surgical schedule sooner rather than later.
Medical ✓ Expert Response
Patricia, the HIPEC route is a good one to ask about specifically in terms of surgical volume. The data from the PRODIGE 7 trial (published 2018) is worth bringing up with your team because it raised some real questions about optimal HIPEC dosing and duration that are still being worked through at different centers. And that's the thing nobody really warns you about, which is that "we do HIPEC" and "we do a lot of HIPEC with good outcomes" are two very different statements. Centers doing 20+ per year tend to have the perioperative (around-surgery) complication rates that are just meaningfully lower. When you're talking to Cleveland Clinic, asking them specifically how many they did last calendar year is completely fair. Your own oncologist should be looped into that conversation too.
3 found this helpful
Medical ✓ Expert Response
Patricia, the financial piece is something I see families get blindsided by even after they've done everything else right. One thing that came up in a support group I co-facilitate at a cancer center in metro Detroit last spring, a woman found out her center was in-network but the anesthesiologist was out-of-network, and that alone was a several-thousand-dollar surprise. So when you're calling insurance, ask them to go line by line on who's credentialed, not just whether the hospital itself is covered.

And the coordination piece the original poster mentioned, that really does matter clinically too. Dr. Chen's point about PRODIGE 7 is worth printing out and bringing to your next appointment honestly. Your oncologist and surgeon being in the same tumor board meeting changes the whole thing.
3 found this helpful
Medical ✓ Expert Response
Everything you said about surgical volume tracks with what the research shows. The Flores et al. data out of Memorial Sloan Kettering found that outcomes for EPP improved significantly at centers doing more than six of these per year, and your surgeon hitting 40 in a single year puts him in a very different category from someone doing two or three.

The coordination piece is the one I wish more people understood before they start making calls. Multimodal treatment for pleural mesothelioma, meaning surgery plus chemotherapy plus sometimes radiation, really does require a team that has worked together before. I've seen cases where a patient had an excellent surgeon at one hospital and then transferred care for chemo to a facility closer to home, and the timing of when pemetrexed (that's the standard chemo drug used after EPP) got started was off because nobody had a shared protocol. It's not that anyone was negligent. The teams just hadn't built that working relationship.

On the insurance piece, you're not being basic by bringing that up. I had a patient in 2021 who drove 3 hours to a high-volume center in Chicago and the out of pocket difference between in-network and out-of-network at her plan was over $40,000. She got it sorted but it took months of appeals.

Talk to your own oncologist about what volume thresholds and center criteria matter most for your specific histology and stage, because the calculus shifts depending on whether you're looking at epithelioid versus biphasic disease. But everything you've described here is exactly how you build a reasonable decision-making framework.
3 found this helpful
Patient
Yeah man, you nailed it on the coordination thing. That's exactly what saved me. My surgeon at U of M literally called my oncologist at Beaumont like two weeks before surgery to map out the whole plan. They were talking about which chemo drugs would work best after the EPP and when to start the tune-up. I remember thinking "okay these guys actually talk to each other" and that was huge for my confidence going in.

The insurance call thing, oof, I wish I'd done that first too. Turns out my deductible was already half burned through from the initial scans and tests so when the surgery bill hit in March I was looking at like eight grand out of pocket before things settled. Learned real fast that you gotta ask the hard money questions upfront, not after you're already on the table.

One thing I'd add is don't just trust the first referral either. I got sent to U of M but I also called Mayo and Cleveland Clinic just to see what they'd say about my case. Different surgeons gave me slightly different approaches, different timelines. Ended up sticking with U of M but at least I knew I wasn't missing something. And yeah the surgeon's experience matters big time. You want somebody who does this stuff all the time, not somebody who does it once a year and has to look stuff up.

Good call on asking people who've actually been there. That forum stuff helped me know what to expect for recovery and what questions to ask before I went under.
Veteran
Man, Carl, glad you got that coordination. That's huge. One thing I didn't see mentioned yet is you gotta ask the surgeon straight up about their complication rates and what happens if something goes sideways during the EPP. I mean, don't freak yourself out, but I asked mine at U of M what his infection rate looked like and what their protocol was if they found something unexpected in there. He was straight with me, told me they'd found adhesions in maybe 15% of cases that changed the scope. That kind of honesty before you go under makes a difference. Also ask about their post-op pain management setup because the first two weeks after that surgery are rough and some places handle it way better than others. I spent time with guys at the VA who had EPP done at smaller hospitals and they got discharged with basically nothing for pain control, then ended up back in the ER. That's preventable if you ask the right questions upfront.
Veteran
Got my EPP at Scripps in San Diego back in December and yeah, everything you're saying tracks. The coordination thing is huge. My surgeon and oncologist literally sat down together before they wheeled me in and mapped out the whole thing. That's when you know you're in the right place.

One thing I'd add is don't be shy about asking how many of these procedures they do. I called Scripps three times asking basically the same question different ways because I needed to know they weren't gonna be figuring it out as they go. They told me straight up they do around 35-40 a year and that was enough for me to feel confident. If a place gets defensive about that question or doesn't have a solid number, that's a red flag.

The insurance thing is real. VA covered most of mine but I still had to verify what counted as in-network for the post-op chemo. Took like four phone calls to get a straight answer. And your deductible might reset at weird times so ask about that specifically. I know a guy who had surgery in December and found out in January his deductible reset and suddenly he owed more for the chemo. Total mess.

Also if you're a vet, get on your VA claim early. I filed mine in November, got diagnosed in October, and I'm still waiting on the approval in February. The earlier you file the better, even if you're not sure about everything yet. Doesn't cost anything to get the paperwork rolling.
Medical ✓ Expert Response
Carl, that call you described between your surgeon and oncologist is actually the thing I try to get patients to ask about explicitly before committing to a center. Not just "do you have a tumor board" but literally who picks up the phone when questions come up mid-treatment.

One thing nobody's mentioned yet is the anesthesia and perioperative team. For EPP especially, you want to know if the anesthesiologist has done these cases before, not just the surgeon. I had a patient in late 2022 who had an otherwise excellent surgical team but the post-op pain management was rough because the anesthesia group wasn't used to the specific demands of that procedure. Recovery got harder than it needed to be.

So when you're touring a center or doing a consult, asking "how many of these has your anesthesia team managed this year" is a completely reasonable question. Honestly you can just say your doctor suggested you ask. Talk to your own oncologist about this too because they'll know which centers have the full package, not just the star surgeon.
2 found this helpful
Patient
Yeah that's exactly it. My anesthesia guy at U of M actually came and talked to me before surgery, asked all these questions about my work history and what kind of shape I was in. I didn't think much of it at the time but looking back that was huge. He knew what he was walking into.

The phone call thing is smart to ask about. I wish I'd thought to ask that specific question before we started. Good tip for folks reading this.

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