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evaluating treatment centers for stage 2 peritoneal - surgery vs chemo vs multimodal

Patient · · 75 views
I'm about three weeks into diagnosis and already drowning in options. My oncologist at Cleveland Clinic is pushing HIPEC surgery followed by chemo, but I've also gotten second opinions from two other centers and they're saying different things. One wants surgery first, the other wants neoadjuvant chemo to shrink it before surgery.

I worked at Johns-Manville on Euclid Ave from 1978 to 1985 in insulation manufacturing, so my exposure timeline is pretty clear. That actually helped narrow down where the meso came from, which is weird to say but at least there's no mystery.

Here's what I'm trying to figure out. When you're looking at treatment centers, what actually matters? I've read the studies about multimodal therapy having better outcomes than single modality, but every center I talk to frames their approach as "multimodal" and they all mean something slightly different. One's doing EPP with HIPEC, another's doing CRS with HIPEC, another wants aggressive chemo induction first. I have access to decent medical libraries through my former union and I've been pulling PDFs, but I'm getting lost in the methodologies.

The specific questions I can't find good answers for. Does it matter if the surgeon has done 50 meso cases vs 200? I know volume matters for pancreatic cancer, is it the same here? What should I be asking about their pathology review process? And how do you actually evaluate whether a center's "multimodal" approach is coordinated or just throwing three things at you because they each have that department?

I'm keeping a symptom journal and tracking my CA-125, so I'm comfortable with detailed medical conversations. I just don't want to make this decision based on which doctor has the nicest bedside manner or which center's website looks most professional.

Anybody else gone through this evaluation process? What questions did you ask that actually changed your decision?

9 Replies

Veteran
Yeah, surgeon volume matters big time with meso - I'd push hard on that number and ask for their complication rates too, not just case count. And don't let them dodge the question about whether their oncology and surgery teams actually talk to each other or if you're just getting passed between departments.
Medical ✓ Expert Response
William's point on volume is right, and the complication rate question is the one most people forget to ask. I'd add something to that though: ask specifically about their pathology review process, because peritoneal meso gets misread more often than people realize. The 2018 MESOPATH study out of France found diagnostic discordance in something like 27% of cases reviewed by non-specialist pathologists. That number stopped me cold when I first read it.

The neoadjuvant chemo question is genuinely unsettled right now. Some centers with strong peritoneal programs, like the one at Brigham and Women's, have moved toward induction chemo before CRS/HIPEC for higher-burden disease because it gives them a clearer picture of tumor biology before they open someone up. That's not the same as just "throwing chemo at you first." The real question to ask any center is whether their tumor board reviews peritoneal meso cases specifically, and how often that board actually meets. Weekly is meaningfully different from monthly.

The EPP vs CRS distinction you raised matters too. EPP for peritoneal is largely fallen out of favor at experienced centers, so if someone's pushing that hard, I'd want to know why.

Talk to your own oncologist about all of this, obviously. But given your exposure timeline and the clarity of your diagnosis, you're in a position to push hard on these specifics and expect real answers.
3 found this helpful
Medical ✓ Expert Response
What you're doing, pulling actual literature and tracking your CA-125 from week three, that's exactly the kind of engaged approach that tends to produce better conversations with your care team. And three weeks in, feeling like you're drowning is genuinely normal. The decision fog is real and it's exhausting.

On the volume question, yes it matters here just like with pancreatic. There's research out of the Peritoneal Surface Oncology Group showing outcomes correlate with institutional volume, not just individual surgeon volume. I'd ask specifically how many CRS/HIPEC procedures the center did in 2023, not career totals. Some surgeons inflate their numbers with all peritoneal disease, not just meso. You want meso-specific case counts.

The neoadjuvant vs. upfront surgery question is genuinely unsettled in the literature right now, so the fact that three centers disagree isn't necessarily a red flag. What matters is whether they can articulate why they're recommending their approach for your specific peritoneal carcinomatosis index score, not just their general preference.

The question that actually changed decisions for people I've worked with in our support groups, ask each center: "Who reviews my case before we finalize the plan and who's in that room?" A truly coordinated tumor board with surgical oncology, medical oncology, radiology, and pathology all present before your surgery date is different from sequential consultations that get loosely compared afterward. That distinction matters enormously.

For pathology specifically, ask whether they're doing immunohistochemistry in-house or sending slides out, and whether a second pathologist reviews meso cases given how often it's initially misread.

If you want to talk through any of this with someone outside the clinical team, please reach out. Oncology social workers can help you organize the questions and sometimes sit in on those conversations.
3 found this helpful
Patient
That volume data is exactly what I needed to hear confirmed. I've been trying to find the specific numbers on how much volume actually moves the needle here, and I haven't found good thresholds yet. Do you know if there's a sweet spot where you see outcomes plateau, or does it keep improving with every additional case? I'm trying to figure out if the difference between a center doing 30 cases a year versus 60 is meaningful or if I'm splitting hairs at that point.

Also, I'm curious what you see people ask about the pathology review piece. My symptom journal actually has notes on some imaging findings from my CT, and I'm wondering if I should be pushing harder on how they're staging it before we commit to a surgical approach.
Veteran
I'm gonna be straight with you, your situation is different from mine but the evaluation piece matters everywhere. I had pleural, stage II, so surgery was my path. Had it done in December at UCSD and the surgeon there had done north of 150 meso cases. That number mattered to me because when they're cracking your chest open you want someone who's seen every variation of how this thing grows.

What I found out talking to different places is that some centers really do have their teams locked in together and some are just departments that happen to be in the same building. Ask them straight up if the surgeon, the medical oncologist, and the palliative care doc actually meet together to discuss your case before treatment starts or if you're just getting shuffled between specialists. At UCSD they had me in a room with all three of them same day. That was real multimodal. Other places I called, the surgeon didn't even know who my chemo doc would be yet.

The pathology review thing is legit important. Ask if they do their own path review or if they just take whatever your initial biopsy showed. Some centers will re-examine your samples with their own pathologist because staging can change things and it affects what chemo protocol makes sense. That's a real difference, not just something fancy they say.

On the neoadjuvant versus surgery first question, I can't tell you which is right for peritoneal since I didn't face that choice. But I will say the surgeon at UCSD walked me through why they wanted surgery first for my type and situation and it wasn't just "that's what we do here." They could explain the reasoning. If a center can't explain why their sequence is better for your specific staging, that's a red flag.

You've got good instincts already. Keep pulling those PDFs. When you talk to centers, ask about their five year survival rates for stage II peritoneal specifically, not just general meso numbers. And ask what percentage of their patients actually complete the full multimodal course versus having to bail out partway through due to complications or just can't handle it physically.

The CA-125 tracking is smart. Keep that going.
Family
You're asking exactly the right questions and honestly it's impressive you're this methodical three weeks in. Most people are still in shock at this point.

So here's what we found with my dad. He's Stage IV pleural, not peritoneal, so different beast, but the evaluation process taught me something. Volume absolutely matters. We initially went to a surgeon who had done maybe 30-40 meso cases and his whole pitch was EPP plus aggressive chemo. Then we got to MD Anderson and talked to someone who'd done over 300 cases and his entire approach was different. He actually said EPP might not be appropriate for my dad's staging, which nobody else had mentioned. The difference wasn't just experience, it was that the high-volume surgeon could articulate exactly why each decision was being made instead of just cycling through the standard protocol.

For your evaluation specifically, ask them to walk you through their actual coordination process. Like literally ask "show me how your surgical team talks to your oncology team between phases." One place we looked at, the surgeon and medical oncologist didn't even share the same EMR. That's not multimodal, that's just sequential treatments. At MD Anderson they had tumor board conferences where my dad's case got reviewed across departments before and after each phase. You'll hear the difference immediately in how they answer that question.

About pathology review, ask if they do in-house confirmation or if they're working off your Cleveland Clinic slides. Then ask if they'd re-review if there was any ambiguity. We had a pathology discrepancy that actually mattered for staging and the high-volume centers took that seriously.

Your CA-125 tracking is smart but also ask them what their actual endpoints are. Different centers define response differently. Some use imaging, some use tumor markers, some use both. Know which one matters at each place.

The honest thing though is that at Stage II peritoneal you're in a window where aggressive multimodal actually has real data behind it, unlike some of the later stages where we're basically throwing everything and hoping. That's the one advantage of where you are right now. The trade-off is that means the surgery is serious business and surgeon volume does correlate with complication rates in the literature.

One more thing. Ask each center about their follow-up protocol after treatment ends. How often are you imaging? How often are you seeing oncology? We learned that some places basically discharge you after treatment and others keep you on structured surveillance. That mattered more to us than we expected.

You've got time to get this right. Three weeks in is still early decision-making even though it feels urgent.
Patient
The volume question is exactly what I needed to hear about, especially since one of my options is at a smaller regional center with solid credentials but limited meso cases. Did MD Anderson's surgeon recommend a different approach than the first one, or was it more about how they explained the same procedure? I'm trying to figure out if the difference in recommendation comes from experience or just different treatment philosophies.
Patient
Hey, one thing nobody's mentioned yet is asking them point blank about their tumor board. Like, do they actually have surgeons, oncologists, and pathologists sitting in the same room looking at YOUR scans together, or are they just handing off reports between departments. I had my EPP done in February at a place that does this every Tuesday morning and you could tell the difference. My surgeon literally said in my pre-op meeting "the chemo team and I already talked through your case and here's what we're thinking for sequencing" instead of me being the messenger between three silos.

Also ask about their neoadjuvant approach specifically if they're offering it. My place wasn't pushing it for my stage but they had a whole protocol written down for who gets it and why, not just a maybe-or-maybe-not situation. The fact that you got three different answers from three centers is actually pretty normal with meso since the data isn't as locked down as with other cancers, but a good center should be able to explain their reasoning in a way that makes sense given your specific pathology, not just their general preference.

One more thing, ask if they'll do a second pathology review on your biopsy sample. Sounds like admin stuff but it matters, especially early on when you're trying to nail down staging.
Patient
That's exactly the kind of operational detail I haven't seen addressed in any of the literature I've pulled. The tumor board question is smart because you're right, there's a difference between "multimodal" coordination and actual coordination. Did your center require you to be present for those discussions or did they just brief you afterward on what was decided? I'm trying to figure out how to ask about this without sounding paranoid, but honestly if a place can't articulate how their departments communicate about individual cases, that seems like a red flag to me.

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