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picking a treatment center for meso - what actually mattered when I had to decide

Veteran · · 3 views
So I had surgery in December at Scripps here in San Diego and I'm gonna be straight with you about what matters and what doesn't when you're trying to pick where to get cut open.

First thing. You need a surgeon who does this stuff regularly. Not the guy who does meso once a year alongside his regular lung cases. I talked to three places and Scripps had a surgeon who'd done about forty of these procedures. That number stuck with me. My oncologist here said the difference between twenty a year and five a year is the difference between knowing what he's gonna find in there versus guessing.

Second. Ask them flat out what their survival numbers actually are for your stage. Not the national average. Their numbers. Their patients. Stage II pleural like mine, the places that do high volume cytoreduction plus chemo had median survival around three years versus like eighteen months at smaller centers. That's real.

Third thing that nobody talks about enough is the chemo support during recovery. After surgery you're weak and you're gonna need chemo and if your treatment center doesn't have oncology right there or close by, you're driving an hour for appointments while you're healing. That matters more than people think.

I also looked at whether they had tumor boards, meaning they actually sit down and talk about your case with multiple doctors instead of just your surgeon doing his thing alone. Scripps did that. Made me feel like they were actually thinking about me as a person not just another procedure.

The VA thing. If you're filing a claim like I am, ask if they work with VA patients and if they know how to document stuff for VA purposes. Some centers don't care about that and then your claim gets held up because documentation doesn't match what VA needs. Anyway, that's a pain I wouldn't wish on anybody.

My advice. Call five places minimum. Ask them how many procedures they do a year. Ask for survival data. Ask about chemo support on site or nearby. Ask about tumor boards. If they act annoyed that you're asking questions, that's your answer right there.

I'm four months post-op now and still dealing with recovery but the surgery itself went clean. Surgeon got everything he could see. You want that surgeon.

1 Reply

Patient
Man, this is gold. I'm gonna bookmark this because you nailed exactly what I wish somebody had laid out for me straight like this back when I was shopping around.

The surgeon volume thing really hit home. I ended up at Henry Ford here in Detroit and before I committed I asked the same question you did. Guy had done like thirty-five of these over maybe eight years so not quite your surgeon's numbers but enough that he wasn't learning on my chest, you know? When the doc told me that difference between knowing and guessing I about fell over because that's exactly how it felt when I talked to the first place that wanted to take me on.

Your point about the chemo support nearby is something I didn't weight heavy enough going in and kinda regret that. I had to do my follow-up tune-ups at a different hospital which meant coordinating with two places and my wife got real tired of that real quick. Not a dealbreaker but man would it have been nicer to have it all under one roof while I was still healing up.

One thing I'd add from my own experience in February after surgery, ask them about their complication rates too, not just survival. Doesn't do you good to know they're good at the operation if they're sloppy about infections or air leaks after. My surgeon walked me through his infection rate and his readmission numbers and honestly that mattered as much as the big survival stat.

You doing okay now four months out?

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