Skip to main content
Call 24/7: 1-800-400-1805
1-800-400-1805 Free Case Review
Sign In Join Free

picking your doc when you got meso - what actually matters and what's just marketing

Patient · · 84 views
So I had to do this back in December when I got diagnosed, stage 1 pleural, and lemme tell you it's not like picking a regular doctor. Everyone's got a website that looks fancy but that don't mean squat when it comes to actually knowing what they're doing with meso.

First thing, you want someone who does meso cases all the time, not just sometimes. I called like eight different places and asked straight up how many EPP surgeries they do a year. One guy in Ann Arbor said he does like 15-20 a year and that felt solid compared to the place in Grand Rapids that was like "oh we've done maybe 3 or 4." That's a huge difference.

Don't get hung up on the fancy brochure stuff either. One center kept talking about their "cutting edge facility" and their "holistic approach" but when I actually talked to people who'd been treated there, the real story was different. Ask to talk to actual patients if you can, not just testimonials on their website. Real people will tell you if the doc listens or if he just talks at you.

My surgeon was Dr. Hartley at Karmanos in Detroit and the thing that sold me wasn't the facility, it was that he had done like 300+ EPP surgeries over his career and he actually answered my dumb questions without making me feel stupid. He explained my scan results like I could understand them, not like he was reading from a textbook.

Also check if they got a full team. You don't want just a surgeon or just an oncologist, you want both working together. The place I went had the surgeon, the chemo doc, a nurse coordinator who checked in on me regular, that kinda thing. Makes a difference when it comes time for your tune-up after surgery.

One more thing and this is practical stuff, make sure they're in network with your insurance or at least find out what it's gonna cost. I had good coverage but I called ahead and got the actual numbers before I committed to anything. Don't want surprise bills on top of everything else you're dealing with.

Take your time picking. This ain't a tire change, it's your life.

12 Replies

Family
This is so solid advice. The volume thing really matters and I wish more people asked that question upfront. When my dad was diagnosed in March, I actually did something similar to what you did, except I had the advantage of knowing enough medical terminology to ask the right follow-ups. I called five different centers and specifically asked about their multimodal approach, which is basically what you're describing with the full team. How many surgeons do you have? How often do chemo and surgery consult before treatment planning? That stuff.

What struck me most was exactly what you said about the surgeon actually listening. Dad's initial oncologist at a smaller hospital kept talking about palliative care right away, and while I respect that perspective, I wanted someone who'd at least discuss aggressive options first. We ended up at Northwestern and the team there sat down and mapped out what his scans actually showed, not just what they assumed based on stage. That made all the difference in what we decided to do.

The insurance piece though, yeah. We got hit with some out-of-network stuff we didn't anticipate even with his Medicare. Called the patient financial coordinator like three times before surgery and it saved us thousands. Most people don't think to do that but it's not awkward to ask, they deal with it constantly.

Your point about talking to actual patients is underrated. You get the real story that way. Congratulations on being stage 1 by the way, that's a completely different ballgame than where my dad landed.
Medical ✓ Expert Response
The volume question is the right instinct and there's actually data behind it. The IASLC published findings showing outcomes at high-volume mesothelioma centers were meaningfully better, not just marginally. So asking "how many EPP surgeries do you do a year" isn't being difficult, it's being smart.

One thing I'd add that doesn't get mentioned enough: ask specifically whether they're doing EPP or P/D (pleurectomy/decortication) and why they're recommending one over the other for your specific case. A surgeon who can walk you through that reasoning in plain terms, not just "this is what we do here," is telling you something important about how they think. Centers that only do one approach regardless of staging... that's worth noting.

And yeah, the multidisciplinary piece is real. When I've seen the best outcomes it's almost always been at places where the surgeon and the medical oncologist are actually talking to each other before the first cut, not just handing off a chart.

Talk to your own oncologist about any of this, every case is different.
3 found this helpful
Family
You touched on something that's been huge for us and I don't think gets talked about enough, the nurse coordinator piece. My dad's been on palliative care since October and honestly that relationship with his oncology nurse has been the difference between me feeling like we're managing this okay and feeling completely lost. She knows his case inside and out, she catches side effects before they become problems, and when I have questions at 2am because I can't sleep I can actually reach her the next day instead of playing phone tag for a week.

When we were vetting places back in March I asked about that specifically, like who's actually gonna be checking in on him regularly between appointments and who handles the stuff that falls through the cracks. One center basically said "your oncologist will manage that" which is code for nobody's managing it. The place we went with had a dedicated coordinator and that's turned out to be worth more than any fancy marketing material. She's the person who knows about the insurance stuff, the clinical trial options, how he's actually doing day to day. My dad even jokes that she's the only one who calls him to ask how he's feeling instead of just what his latest scan shows.

So yeah, ask about that. Ask who's gonna be your point person when things get messy, because they will get messy.
Medical ✓ Expert Response
This is such good practical advice and I'm glad you took the time to write it out. The volume question especially, asking how many EPPs a surgeon has done, that's something I wish more patients knew to ask upfront. There's actually research showing outcomes are meaningfully better at high-volume centers for complex thoracic procedures, and "high volume" in meso terms is a pretty small number compared to something like hip replacements.

The multidisciplinary team piece is something I saw make a real difference when I was working at Roswell Park in Buffalo, probably around 2019. Patients who had a nurse coordinator as a consistent contact person reported feeling less lost between appointments, and that sense of not falling through the cracks matters more than people realize when you're in treatment.

And yeah, patient testimonials on a hospital website are basically marketing. Real conversations with former patients are something else entirely.

One thing I'd add from my own work with families going through this, the emotional load of picking a doctor while also processing a new diagnosis is genuinely a lot to carry. Some people find it helpful to journal what questions matter most to them before those calls, just so fear doesn't crowd out the practical stuff. If the stress of it all starts feeling too heavy to manage alone, talking to a counselor who specializes in oncology can really help, not as a last resort but just as part of taking care of yourself through this.

Stage 1 is where you want to be. Sounds like you did your homework.
3 found this helpful
Patient
Yeah, the team thing really made a difference for me. After the EPP I was pretty banged up and having that nurse coordinator check in, plus knowing the surgeon and chemo doc were actually talking to each other about my case, that took a lot of the stress off. I wasn't just a file being passed around, you know? And you're right about the volume stuff being eye-opening. When I found out one place had only done a handful, I realized I wasn't being picky, I was just trying not to be a guinea pig.
Family
This is such good advice and honestly it mirrors exactly what we went through with my dad back in March when he got diagnosed. The difference between a center that sees meso regularly versus one that doesn't is night and day, and you nailed it on not getting distracted by the marketing stuff.

We did something similar where I called around asking about case volume and multimodal treatment protocols. One place kept using buzzwords about "integrated care" but when I dug into what that actually meant, it was basically just having people in the same building. My dad's current palliative care team at Northwestern actually coordinated with his original oncologist from before we shifted to comfort care, and that continuity has been huge.

The patient testimonials thing is real. I'm a nurse practitioner so I can usually read between the lines on medical stuff, but even I found it helpful to talk to people who'd actually been through treatment there. You learn things like whether staff returns your calls, if the doc spends time with you or rushes, whether they adjust the plan based on how you're actually tolerating things. Those details matter way more than square footage of the facility.

One thing I'd add since we're now almost a year into this: make sure whoever you pick is willing to talk about what happens if the treatment plan needs to shift. My dad responded well initially but then things changed in September, and we needed a team that could pivot to palliative focus without it feeling like abandonment. Not every center handles that transition well. Ask them point blank how they approach that conversation.

And yes, the insurance piece. Get those numbers upfront. We did that and it saved us stress later.

You're doing this the right way by asking the hard questions.
Patient
Yeah your dad's experience sounds like it lined up with mine pretty good. The buzzword thing is real, I swear they all got the same marketing playbook. Did your dad end up going with a high-volume center too, or did you guys have to make some compromises based on where you were located? I got lucky being close to Detroit but I know not everybody's got that option.
Patient
Man, you nailed it. I went through the same thing back in December and honestly that part where you talk about the fancy websites meaning nothing, yeah that hit different. I probably called like six places myself asking about case load and most of em hemmed and hawed around the numbers.

Dr. Hartley's the one who did my EPP back in February and I gotta say your experience tracks with mine. The guy actually sat down and explained things in regular English instead of medicalese. When I asked him if I could still work on cars after recovery he didn't just say "no" he explained WHY in a way that made sense, something about lung function and respiratory stuff. Felt like he was talking to a person not just reading off a script.

The team thing is huge too. After my surgery when I was doing the chemo tune-up, having that nurse coordinator checking in on me made all the difference. She'd call and ask how I was actually doing, not just going through the motions. My wife appreciated that somebody knew what was going on besides us.

One thing I'd add is don't be shy about asking them straight up if they'd do the same surgery on themselves or their family. I asked Hartley that exact question and he said yeah without hesitation. That stuck with me through the whole thing. Insurance stuff too man, I spent like three hours on the phone with my plan before I committed and it saved me from some nasty bills down the road.

You're doing it right by asking these questions upfront.
Family
omg thank you for this. i'm literally in the middle of trying to figure this out for my mom and it's so overwhelming. she's stage III so obviously more complex than your situation but the stuff you said about asking how many cases they actually do, that's gold. i didn't even think to ask that specifically.

we're looking at places in Arizona mostly since i moved here to help her, but we're also talking to someone at Mayo in Phoenix and one center in California. the Mayo doctor seemed really good on the phone but you're right, it's hard to tell who's actually gonna be the person who listens vs just running through the motions. my mom gets frustrated when doctors talk down to her so that matters a lot.

the insurance thing hit different. we called our provider last week and found out that one of the places we were considering isn't fully in network and it would've cost like $40K out of pocket. i was already stressed enough without adding that on top of it all.

honestly i'm also realizing i need to ask about the full team thing. my mom's current oncologist is great but i don't think she's coordinating with the surgeon we're talking to and that sounds like a mess waiting to happen. did you have to push for that to happen or did the center just do it automatically?

sorry this is so long i just... it helps to know someone else went through this and figured it out. thank you
Attorney ✓ Expert Response
Really solid advice here, and the volume question is one I bring up constantly when clients are trying to figure out where to go. There's actually data behind this. Studies looking at EPP outcomes consistently show that centers doing fewer than 10 of these procedures a year have measurably worse complication rates. The 15-20 figure you mentioned from Ann Arbor is right in the range where you'd expect a surgeon to have real pattern recognition, the kind that doesn't come from a textbook.

The multidisciplinary team piece matters legally too, not just medically. When cases go to litigation, defense attorneys will look hard at treatment records to challenge causation and prognosis. A coordinated team that documents everything thoroughly, tumor boards, treatment plans, follow-up notes, that record tends to hold up much better than fragmented care from separate providers who aren't talking to each other.

One thing I'd add from cases I've worked on since around 2004, the nurse coordinator role you mentioned is genuinely underrated. In one case we worked, gaps in follow-up documentation created real problems reconstructing the treatment timeline. When you've got a coordinator keeping consistent notes, it protects you medically and, if it comes to it, legally.

On the insurance side, if you're in Michigan, it may be worth asking whether any part of your treatment costs could potentially be addressed through an asbestos trust fund claim or civil litigation depending on your exposure history. Those avenues exist separately from your insurance and don't interfere with your coverage.

As always, consult an attorney for your specific situation.
3 found this helpful
Patient
Yeah that data stuff is exactly what I wish I'd known going in. I was just going on gut feeling and asking around, but knowing there's actual studies backing up that volume thing makes me feel better about the choice I made. Did you find that most folks don't even think to ask how many surgeries a doc does, or do people just not know where to start with those questions?
Family
Oh man, this is so helpful to read right now. My mom was diagnosed in August and we're still trying to figure out who her team should be, so seeing someone actually break down what matters vs what's just noise is exactly what I needed tonight.

The thing about asking how many cases they do a year - I wish someone had told me to do that earlier. We've been going back and forth between two places here in Phoenix and one of them kept sending us these glossy pamphlets about their "comprehensive mesothelioma center" but when I actually called and asked specific questions about their multimodal approach and how often they do the procedures, the person on the phone got kinda vague. That was a red flag I probably should've trusted my gut on sooner.

What you said about the surgeon actually explaining things so you understand them really hits different. My mom gets so frustrated when doctors use all this jargon and she just nods along but doesn't actually get what they're saying. I've started writing down questions before appointments and asking them to explain it like we're not medical people because honestly I'm in the room trying to help her understand and sometimes I'm lost too and I'm a college educated person.

The full team thing is huge. We found a place that has the surgeon and oncologist actually in the same building which sounds dumb but it's made scheduling follow-ups so much easier than it would've been if they were across town from each other.

How long did it take you to feel like you'd made the right call with Dr. Hartley? I'm still second-guessing ourselves and it's exhausting.

Share Your Experience

Sign in or create a free account to share your experience.

Sign In Create Account

Discussions in this community are for informational and emotional support purposes only. They do not constitute legal advice, medical advice, or an attorney-client relationship. Always consult a qualified professional for advice specific to your situation. Community Guidelines

Call Now: (800) 400-1805 Free Case Review • Available 24/7