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is meso always a death sentence or can you actually beat this thing

Patient · · 39 views
So I got diagnosed back in December and my first thought was basically game over, you know? But I'm sitting here four months after my EPP surgery feeling pretty decent and I gotta ask the question that was eating me alive at first. Is this thing always gonna kill you or are there people who actually make it?

I know the stats are rough. I get it. But I also know there's a difference between what the numbers say and what actually happens to real people, and I'm trying to figure out which bucket I'm in.

My surgeon at the University of Michigan said Stage I is the sweet spot if you're gonna get diagnosed with this garbage, and that the EPP combined with chemo and radiation gives you a shot at long-term survival. But surgeons gotta be positive, that's their job. I wanna hear from people who are actually living with this.

Anybody here more than a year out? Two years? Longer? What was your stage and what treatment did you do? I'm not looking for false hope, just real talk about whether this is something you can actually get ahead of or if we're all just buying time.

I was working on cars for thirty years without knowing the brake dust was full of asbestos, so I got plenty of anger about how I got here. But I'm also tired of feeling like the diagnosis is the end of the story before it even started.

9 Replies

Family
I'm so glad you asked this because I needed to hear it too, honestly. My mom was diagnosed in August, Stage III, and when we first got that news I just... I couldn't even think straight. Everything felt like it was already over before it started.

But here's what I'm seeing now that I'm six months into this with her. She did the surgery route like you, and yeah some days are really hard, but she's here. She's sitting in my living room right now watching my class videos because she loves seeing what my third graders are up to. That's real.

I think the thing nobody tells you is that the stats don't account for the fact that you're not a statistic. You're a person who already survived thirty years of something that was slowly building up in your body, which honestly takes some guts even if you didn't know it was happening. And now you KNOW. You got the EPP which is aggressive and that's different than just... waiting around.

My mom's oncologist at Banner Phoenix in late November told her that Stage III patients who do the full treatment protocol have better outcomes than people think, especially if they're otherwise healthy. Not magic percentages, but real numbers that don't make it sound like she's already done. She's doing her second round of chemo next week and she's nervous but she's not giving up and neither am I.

I won't lie and say it's not scary. Some days I'm so overwhelmed I can barely grade papers. But the scared feeling is different than the hopeless feeling now if that makes sense. You sound like you're ready to actually fight this thing and that matters.
Family
Joe's on month 8 of immunotherapy now and honestly some days feel almost normal, which still surprises me... I think the difference is having a real plan and a team that knows what they're doing, not just accepting what the first doctor says. How's your oncologist's experience with Stage I cases specifically?
Medical ✓ Expert Response
Four months post EPP and feeling decent is genuinely meaningful. That's not nothing. Your surgeon at Michigan is right that Stage I with the trimodality approach gives you a real shot, and I don't say that to sugarcoat anything.

I've been doing oncology social work for 12 years and the patients I've watched make it to five, seven, even ten years out tend to share a few things. They stayed in close follow-up. They found something to fight toward, not just against. And honestly a lot of them sat with the anger long enough to let it fuel them instead of hollow them out.

The stats people usually quote, the 12 to 21 month median survival, those are population numbers that include late-stage diagnoses, older patients, people who weren't surgical candidates. They don't describe you specifically. A study out of Brigham and Women's published around 2019 found that Stage I epithelioid patients who completed trimodality had 5-year survival rates closer to 30 to 35 percent. That's real. Talk to your own oncologist about what those numbers mean for your specific pathology.

The anger about the brake dust is worth sitting with too, not pushing down. A lot of people I work with find journaling helps when the anger comes up at 2am and there's nobody to call. Some find it helps to connect with others who got here the same way, occupational exposure groups specifically.

If the emotional weight gets heavy and persistent, working with a counselor who understands cancer diagnosis makes a real difference. You don't have to carry all of this by yourself.
3 found this helpful
Medical ✓ Expert Response
Four months out from EPP and feeling decent is genuinely meaningful, not just something to brush off. Your surgeon isn't just being positive for the sake of it. Stage I with epithelioid cell type (if that's what you have, worth asking if you don't know) really does carry different odds than what most people picture when they hear mesothelioma.

I've been doing oncology social work for 12 years and I've sat with a lot of patients in exactly the spot you're in right now. Some of them are still sitting with me. One man I worked with had his EPP at the University of Chicago in March of 2019, Stage I, and he was at his granddaughter's birthday party last fall. That's real.

The research does show long-term survival is uncommon but not impossible, especially with multimodal treatment in early stage disease. A study out of Brigham and Women's tracked patients for over a decade and found a meaningful subset hitting the five year mark. Talk to your own care team about what the numbers mean for your specific pathology though.

What I'd gently push on is the anger piece you mentioned. That's not a side issue, that's actually something that, when it sits unprocessed, can make everything harder. A lot of people find journaling helps get some of that out. And if the anger or the fear starts feeling like it's running the show, working with a counselor who specializes in cancer diagnoses can really shift things.

You're asking the right questions. Keep asking them.
3 found this helpful
Family
Stage I with EPP is genuinely different, and four months post-op feeling decent is a really solid sign. My dad's Stage IV so I'm in a different boat than you, but I've talked to enough patients through my work to know that early-stage folks who do the aggressive multimodal treatment sometimes do get years, not months, so your surgeon isn't just being optimistic.
Patient
Yeah that means a lot coming from someone who's actually in the trenches with this stuff. Your dad being Stage IV and you still saying that about the early-stage folks, that hits different than just reading it online. Did his doctors end up going the aggressive route too, or was it more about managing things at that point?
Medical ✓ Expert Response
Four months post-EPP and feeling decent is not nothing. That's actually something worth sitting with for a second.

I've worked in oncology social work since 2012 and I've sat with a lot of mesothelioma patients, and here's what I can tell you honestly: Stage I with EPP plus trimodality therapy does produce long-term survivors. Not a lot, but they exist and they're real people. There's a study out of Brigham and Women's that tracked patients who hit the five-year mark and they were not statistical flukes. Your surgeon at Michigan isn't blowing smoke.

The anger piece you mentioned... that's so legitimate. Thirty years working on brakes and nobody said a word. In my experience that grief and rage can actually become fuel if you find somewhere to put it, though sitting on it unprocessed tends to catch up with people around month six or seven. I've seen it happen. A journaling practice sounds small but it genuinely helps move some of that through.

What I'd gently encourage, and I say this to everyone dealing with something this heavy, is that if the anxiety and the "am I buying time" thoughts start taking over your sleep or your days, talking to a counselor who specializes in oncology is worth it. Not because something's wrong with you. Because this is a lot to carry.

You wrote your own story getting here. The next chapter isn't written yet.
3 found this helpful
Patient
Yeah that hits different coming from someone who's actually been in the room with people going through this. The five year mark thing, that's the number I keep coming back to in my head at night, you know? My doc mentioned something similar but hearing it from somebody who's worked with actual survivors makes it feel less like sales pitch and more like real possibility. So there ARE folks out there who made it past that mark with stage I, that's what I needed to hear basically.
Veteran
Got diagnosed same month you did and had the surgery too, still waiting on the VA to get their act together but feeling better than I expected at this point. Stage II here so not quite your odds but my oncologist said the same thing about EPP being the best shot we got, and honestly I'm not dead yet so I'm calling that a win.

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