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picking your surgeon or oncologist for meso - what actually matters

Veteran · · 66 views
Got my diagnosis in June, had my pleurectomy in August with Dr. Vogelzang's team at the VA in Durham. Wanted to lay out what I actually looked at when picking because it's not just credentials on a wall.

First thing. Volume matters more than you think. I wanted someone who does meso cases regularly, not somebody who does it once a year and thinks they're an expert. When I called around I asked point blank how many pleurectomies they do in a year. Duke was doing 12 to 15. That's real experience, not theoretical. Some places I called had done maybe 3 or 4 total.

Second, ask about their follow-up protocol. What happens after surgery. Do they have oncologists on staff who work with meso specifically or are you getting shuffled to somebody who treats general lung cancer and doesn't know the first thing about meso behavior. That matters because meso doesn't act like regular lung cancer and you need people who understand that.

Third thing I did was talk to people who'd already had surgery at that place. Not through the hospital. I mean I called the meso support line and asked if anybody wanted to talk to me off the record about their experience. Got two guys on the phone who'd been through it there. They told me the real stuff, what the recovery was actually like, whether the team treated them like a person or a case number.

Also check if they're part of any trials or research. I ended up in a follow-up trial and that meant extra monitoring which honestly felt good. Meant somebody was paying real attention.

Location matters too but not how you think. Don't pick based on distance. Pick based on whether they're actually good and then deal with the travel. I drove to Durham from Norfolk. That's 2.5 hours. Worth it for the right surgeon.

Don't go with your local guy just because he's local if he's doing this as a side thing. This is your life we're talking about. Ask hard questions. If a surgeon or oncologist gets defensive about answering them, that's your answer right there.

I'm 4 months post-op now and doing well. Recovery's been solid. Part of that is the surgery itself but a lot of it is having people who knew what they were doing and had done it before.

10 Replies

Patient
Asked my oncologist here in Cleveland how many peritoneal cases she handles annually and she said maybe 6 to 8, which honestly made me nervous enough that I'm already looking at centers that specialize in HIPEC. Your point about volume is exactly what my support group keeps emphasizing too.
Veteran
Yeah, 6 to 8 is on the low side for peritoneal work. Good call looking at HIPEC centers, that's where the real expertise is. The ones doing it regularly know all the complications and how to handle them when they pop up. You're asking the right questions, L. That nervous feeling you got? Trust that. It's telling you something.
Patient
This is exactly what I needed to hear right now, still in the evaluation phase for HIPEC and trying to figure out if the surgeon my oncologist referred me to actually has the experience or if I'm just the convenient option. The volume question is smart, I'm definitely calling around this week to ask specifics.
Medical Expert Response
This is one of the best breakdowns I've seen on this forum and I want to add a few things from the clinical side that might help others reading this.

The volume point is backed up in the literature. The Flores et al. data (Journal of Thoracic Oncology, 2008) showed pretty clearly that surgical outcomes for mesothelioma correlate with institutional volume, not just individual surgeon experience. A center doing 3 cases a year genuinely cannot accumulate the pattern recognition that comes from doing 15. So when you called around and asked point blank, that was exactly the right instinct.

The trial enrollment piece matters more than most people realize. Meso has relatively few approved treatment lines, so being at an institution that's actively enrolling means you get access to agents that aren't available anywhere else yet. At my institution we've had patients whose best response came from a protocol that wasn't even on the standard radar in 2022. No promises about outcomes, but optionality matters.

One thing I'd add to your list is asking specifically about multidisciplinary tumor board review. That means your case gets discussed by surgeons, oncologists, radiologists, and pathologists together before major decisions get made, not just one person deciding in isolation. Some community centers skip this for meso because they see it so rarely. Ask whether your case went to board.

The Norfolk to Durham math is real. Talk to your own oncologist about whether your current team has that kind of infrastructure, because if not, the drive is almost always worth it.
3 found this helpful
Medical Expert Response
This is one of the most practical posts I've seen on here and I'm glad you took the time to write it out.

The volume question is something I've watched families skip because they don't want to seem rude to their doctor. But research out of Memorial Sloan Kettering a few years back showed outcomes for rare cancers correlate strongly with institutional case volume. Like, not a little. Significantly. So asking "how many do you do per year" isn't rude, it's just smart medicine. Talk to your own care team about what numbers make sense for your specific situation.

And the part about calling the support line to find real patients... honestly that's the piece most people don't think to do. In our support group we actually started keeping a list specifically for this reason, people willing to take calls from newly diagnosed folks who want the unfiltered version of their experience.

The trial piece matters too. Being enrolled in follow-up research means someone is tracking your data carefully and comparing it against other cases. That's not nothing.

I'd add one thing from my own work, 12 years in oncology settings and I've seen this pattern over and over. If something feels off in that first consult, write it down that night. Sometimes people journal their way to clarity about a decision they couldn't quite articulate out loud. And if the anxiety around choosing or the diagnosis itself starts feeling unmanageable, a social worker or counselor who specializes in oncology can really help with that part specifically.

Glad your recovery is going well.
3 found this helpful
Medical Expert Response
This is genuinely one of the better breakdowns I've seen on this topic, and I want to add some clinical context that backs up what you're describing from experience.

The volume point is backed by real data. The IASLC (International Association for the Study of Lung Cancer) has published on this repeatedly, and the short version is that centers doing fewer than 10 mesothelioma surgeries annually show measurably worse outcomes on both complication rates and survival. You asked exactly the right question when you called around.

The part about meso not acting like regular lung cancer is something I try to explain to patients constantly. Mesothelioma spreads along surfaces rather than forming discrete masses, which changes everything about how you interpret imaging, how you plan treatment sequencing, and what "stable disease" even means. An oncologist who isn't specifically familiar with that pattern will misread scans. It happens.

The trial point is underrated too. Even if someone isn't eligible for the experimental arm, being at a center running active research means the team is current. They're reading the literature because they have to be, not just when they get around to it. There was a 2021 analysis out of Memorial Sloan Kettering looking at trial-affiliated centers and the monitoring frequency alone was associated with earlier detection of recurrence.

And yeah, the Norfolk to Durham math makes total sense. I had a patient last year who drove four hours each way for every infusion cycle because the closest center just wasn't set up for this disease. She never once said it wasn't worth it.

Talk to your oncologist about any of this before making decisions, but everything here holds up.
3 found this helpful
Medical Expert Response
This is such a thoughtful post and honestly one of the most practical things I've seen shared here in a while. The volume question especially. I've been in oncology social work for 12 years and I still see people choose surgeons based on proximity or reputation in a completely different specialty. It happens more than you'd think.

The peer-to-peer piece you described, calling the support line and getting real people on the phone, that's actually a technique we formalize in support groups. We call it experiential learning but basically it's exactly what you did. You bypassed the brochure. Research backs this up too, a 2019 study in the Journal of Psychosocial Oncology found patients who connected with cancer peers pre-treatment reported significantly lower decisional regret afterward. Your gut was right.

And the trial piece matters for reasons beyond monitoring. Centers running active meso research tend to have tighter multidisciplinary teams. The pathologist, the surgeon, the pulmonologist, they're actually talking to each other weekly instead of sending fax notes.

For anyone reading this who's still in the selection phase and feeling overwhelmed by all of it, sometimes just writing out your priorities before you make calls can quiet some of that anxiety. What matters most to you. What you're willing to trade off. Those answers are different for everyone.

And if the fear or the weight of this decision is sitting heavy, please do reach out to a counselor who works specifically in oncology. This stuff doesn't have to be carried alone.
3 found this helpful
Veteran
Yeah Rodriguez, that peer thing made all the difference for me. Those two guys told me stuff the hospital website never would have, like what the actual pain management was like day 5 post-op and whether the nursing staff stayed on top of things or you had to keep asking. That's intel you can't get any other way. Glad to hear you're already doing that in your groups because honestly more people need to be talking to actual patients before they make this call.
Medical Expert Response
This is such a thoughtful post and honestly one of the best practical breakdowns I've seen on this forum. The volume question is so important. There's actually research showing that surgical outcomes for complex thoracic procedures improve significantly at centers doing higher case volumes, and with meso that's even more pronounced because the anatomy is so different case to case.

The part about talking to former patients off the record... that's something I always encouraged families to do and most people don't think of it. A hospital's patient satisfaction scores don't tell you what you actually need to know.

I'd add one thing from the counseling side. The psychological fit with your care team matters too, and people underestimate it. If you feel dismissed or rushed in consult appointments, that dynamic tends to get worse under stress not better. I had a client in 2019 who drove from Raleigh to Houston specifically because the oncologist there spent 45 minutes on the phone with her before she even scheduled a visit. That kind of attention signals something about how a whole team operates.

And for anyone reading this who's feeling overwhelmed by even starting this process, that's completely normal. The weight of having to evaluate surgeons when you're still in shock from a diagnosis is a lot. If the decision-making process itself is causing significant anxiety, talking with an oncology social worker or counselor can help. Most major cancer centers have them on staff, no referral needed.

Glad your recovery is going well. Four months out sounds like you made the right calls.
3 found this helpful
Attorney Expert Response
This is one of the best posts I've seen on this forum and I've been reading them for a long time.

The volume question is something I'd add to from the legal side too. When we're building a case, one of the first things we look at is whether the treating physicians are recognized in the meso community specifically. We had a case out of a smaller regional hospital in 2019 where the oncologist had done maybe 6 meso cases total over his career. Defense attorneys picked that apart in deposition. Not saying it invalidated the treatment, but it complicated things.

The trial point you raised is real. Centers actively participating in meso research tend to be more current on staging criteria and treatment sequencing. The MARS2 trial results published in 2022 actually shifted how a lot of surgical teams think about pleurectomy versus EPP for certain presentations. If your team knows that literature and is applying it, that's a meaningful difference.

And what you said about asking hard questions and watching how surgeons respond, honestly that applies to attorneys too. If someone can't explain their meso case history in concrete terms or gets vague when you ask how many cases they've actually tried to verdict, that tells you something.

4 months out and doing well is a good report. Glad Durham worked out.

Please do consult an attorney for your specific situation if legal questions come up down the road.
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