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How to actually find a surgeon who knows multimodal - what I asked before my December surgery

Veteran · · 29 views
So I'm about four weeks out from my surgery and I spent way too much time in October and November trying to figure out who actually knew what they were doing with multimodal treatment. Not just surgery, not just the chemo after, but the whole thing working together.

First thing I did was call three major cancer centers on the West Coast. UC San Diego, City of Hope, Stanford. I didn't ask "do you do mesothelioma" because yeah they all say yes. I asked "who is the thoracic surgeon leading your multimodal protocol for pleural meso right now and can I talk to them." Two of them transferred me three times. One got me on the phone with Dr. Marcus Chen in two business days and he actually answered my questions instead of reading from a pamphlet.

Here's what mattered when I talked to him. He knew the difference between EPD and P/D without me having to explain it. He said "your case looks like a candidate for surgery followed by chemo and we'll reassess for radiation" instead of "we'll do surgery." He had numbers. Not percentages, actual numbers of how many pleural meso patients he'd done multimodal on in the last three years. He said 34 in the last two years. When I asked what happened to them he didn't dodge it.

I also asked about the chemo oncologist he works with. If your surgeon doesn't have a name ready, that's a red flag. They should be coordinating. Dr. Chen named Dr. Patricia Reeves and said they meet weekly on cases. That's real collaboration, not just "we have an oncology department."

One thing nobody tells you is to ask about the gaps between treatments. I asked "how long after surgery do we start chemo" and he said 4 to 6 weeks, depends on recovery. Then I asked "what if I'm not recovered, do we push it" and he said sometimes yes sometimes no and here's why we make that call. That's the answer that made me trust him.

I also checked the VA records thing because I'm a Camp Lejeune guy from 78 to 82 and I wanted to know if my service exposure meant anything to him. He asked the right questions about the barracks and the ship. He knew asbestos was in the steam lines on the Iwo Jima. He didn't pretend he was a VA expert but he said "I've worked with enough vets that I know how to document this for your claim." That mattered to me.

The surgery was December 6th at UC San Diego and yeah it was rough but I knew going in that this team had done this before and they had a plan for what came next. Don't just pick the closest hospital or the one your regular doctor says. Make three calls. Ask for the surgeon. Ask about the oncologist. Ask what happens between treatments. If they won't give you specifics you don't want them.

9 Replies

Patient
Man, this is gold. I did almost exactly this back in October when I got my diagnosis and it made all the difference. I'm in Detroit so I called Mayo, Cleveland Clinic, and U of M. Got the same runaround from two of them but Cleveland had this thoracic surgeon Dr. Sarah Kline who picked up and actually talked to me like I was a person, not a case number.

Your point about asking the oncologist name is huge. I did that and found out mine wasn't even in the same building as the surgeon, which would've been a mess. They do video calls between cases but that's not the same as them actually knowing each other's work.

One thing I'd add that nobody told me either - ask about the EPP recovery timeline. I had my surgery in February and they were real honest that the first four weeks were gonna suck. I mean they really suck. But because they prepped me for it I didn't panic thinking something went wrong. Just knew it was part of the deal. Ask them what week you'll feel like garbage and what week you start feeling slightly less like garbage.

Also make them tell you their chemo plan before you go under. Don't let them say "we'll figure that out after surgery." Mine had it written down. Cisplatin and pemetrexed, four cycles, starting six weeks post-op if my lungs looked good. Knowing that going in made the surgery less scary somehow.

You nailed it on the VA stuff too. That's the kind of thing that separates the surgeons who've actually worked with our guys from the ones who just nod and move on.
Veteran
Yeah Cleveland Clinic, that makes sense they'd step up like that. The part about your oncologist not even being in the same building though, that's exactly what I was worried about and why I kept pushing on that collaboration question. Did they fix that for you or are you still dealing with the distance between them?
Family
This is so helpful and I'm glad Carl chimed in too because yeah, that specific vetting process really does change things. What I'd add from watching Joe go through this starting in September is that you should also ask the surgeon point blank about what happens if complications show up during surgery. Like, is the oncologist on call that day? Does your chemo plan change if they find something unexpected? Joe's team at City of Hope told us upfront that Dr. Reeves (his oncologist) actually comes to pre-op briefings, and if something shifts during the procedure they're making calls in real time about the chemo timeline. That kind of integration is what separates "we have specialists" from "we actually work as a team." Also don't be shy about asking for patient references if you can get them. We talked to two other pleural meso patients who'd gone through their program and honestly that 20 minute conversation was worth more than any brochure. One of them told us the exact week Joe could expect to feel human again after surgery and he was almost right on the nose. Makes a difference knowing someone else made it through and can tell you the real timeline instead of just the medical one.
Medical Expert Response
What you put together here is genuinely one of the most useful things I've seen posted on this forum. Twelve years in oncology social work and I still share this kind of framework with patients because most people don't know they're allowed to interview their surgeon.

The question about the gap between treatments is the one I wish more people asked. I've sat with families who were blindsided by a six week wait after surgery and thought something had gone wrong. Knowing ahead of time that the timeline is intentional and that the team has a real decision process for adjusting it... that changes everything about how you recover emotionally during that stretch.

The coordination piece matters more than people realize. A 2019 study in the Journal of Thoracic Oncology found that mesothelioma patients treated at high volume centers with dedicated multidisciplinary teams had meaningfully better outcomes than those who had the same procedures done in lower volume settings. Talk to your own doctor about what that means for your specific situation, but the "they meet weekly on cases" detail you described is exactly the kind of thing that puts you in that category.

And thank you for including the Camp Lejeune piece. I've worked with several veterans from that era and the documentation question comes up every single time. Finding a surgeon who already understands the exposure history and knows how to support the claims process is not something most people think to ask about.

Four weeks out is still really early. Be gentle with yourself.
3 found this helpful
Veteran
Got my pleurectomy at Naval Medical Center San Diego back in August, right after diagnosis in June. Your approach is solid, M. Asking the hard questions up front saves you from finding out later that nobody's talking to each other.

What struck me about your post is the oncology coordination piece. Our thoracic surgeon Dr. Patel had Dr. Reeves lined up before I even went under, which I didn't appreciate until week five of recovery when chemo started on schedule. No delays, no "we're trying to figure out who handles this part." They had it mapped out at 0800 like a watch rotation on the Oriskany.

The gap between surgery and chemo is real. I was cleared for chemo at week four but still sore as hell. They started anyway because my numbers looked good and waiting would have cost us momentum. Hurt like nothing I'd felt since 1987 but I understood the why going in, and that matters more than you'd think.

One thing I'd add to your list: ask them point blank what the recurrence rate looks like for your stage and histology type. Not the glossy version. The actual numbers if they have them. Our team said roughly 40 percent of Stage II pleural cases see recurrence within three years even with multimodal, and that honesty changed how I approached the whole treatment mentally. Stopped me from thinking this was a one and done situation.

You're four weeks out. That's good timing for starting the next phase. Recovery from the surgery itself is brutal but manageable. The chemo after is different kind of hard. Make sure whoever your oncologist is, they're actually checking in on you between rounds and not just running protocol.

You picked the right surgeon if he answered the gaps question like that.
Veteran
Wait, you got Dr. Reeves too? That's actually reassuring to hear because it means the coordination thing isn't just luck on my end. And yeah, the fact that Patel had her lined up before surgery tells me they've done this dance enough times to know what works. Sounds like you got the right setup from day one. How's the chemo going for you now?
Medical Expert Response
This is one of the best posts I've seen on here in a long time. Twelve years doing oncology social work and I still share this exact advice when families come to me panicked in October trying to figure out who to trust before a winter surgery.

The weekly case conference thing is the tell. At Moores Cancer Center I've sat in on those meetings and the difference between a surgeon who can name their chemo partner and one who shrugs is enormous. Research actually backs this up, multidisciplinary team care in pleural meso is associated with meaningfully better outcomes, not marginally better, meaningfully.

And the gap question you asked, about what happens between treatments if recovery is slow, that's the question I coach families to ask and most people don't think of it until something goes wrong. You thought of it before December 6th. That's not small.

Four weeks out is still early. The emotional weight of having made all those calls, done all that research, gone through the surgery, and now waiting to see what comes next... it can hit differently once the adrenaline fades. I've seen that a lot. If you find yourself struggling to process it all, working with a counselor who specializes in oncology can genuinely help. Not because anything is wrong, just because you've been carrying a lot.

Wishing you a steady recovery.
2 found this helpful
Patient
I'm taking notes on these exact questions before I talk to surgeons about HIPEC, this is exactly what I needed to know to ask. Did Dr. Chen say anything about the timing between cytoreduction and the heated chemo that made sense for peritoneal cases specifically?
Medical Expert Response
This is one of the most practical posts I've seen on this forum and I've been coming here for years. What you did in October and November, that process of calling three centers and asking for the surgeon directly, that's exactly what I've watched families struggle to do when they're already overwhelmed and scared.

The question about the gap between treatments is something I talk about with clients all the time. Most people don't think to ask it until they're sitting in recovery wondering what's next. You asked it before you were even on the table. That took real clarity of mind.

The weekly tumor board coordination you described with Dr. Chen and Dr. Reeves is what the research actually supports. A 2021 review out of the International Mesothelioma Interest Group found that centers doing 20 or more meso procedures annually had meaningfully better outcomes, and a big part of that was exactly this, surgeon and medical oncologist treating the case as one integrated plan rather than handing you off like a relay race. Talk to your own care team about what the numbers mean for your specific situation.

And the Camp Lejeune piece matters. Having a surgeon who knew asbestos was in the steam lines on the Iwo Jima without you having to educate him... that's not small. That's someone who has actually listened to his patients.

Four weeks out is still early. I hope you're resting and letting people help you. If any of the emotional weight of this starts feeling like too much to carry on your own, a counselor who works specifically in oncology can be really grounding during recovery.
1 found this helpful

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