symptoms I had before diagnosis - peritoneal not lung but figured I'd share what to watch for

Yeah man, glad you posted this because most of what I read online is all about the lungs too. I got the pleural kind but what you're describing sounds rough. That whole thing about the weight shift is interesting because my doc mentioned something similar happens with fluid buildup, just in different spots depending on which type you get.

The fatigue part really hits home. After my EPP surgery back in February I felt like I'd been through a full rebuild, not just a tune-up like I thought. Took longer to bounce back than they said it would. But pushing your doc for imaging is spot on. We didn't mess around once we had questions, got that CT pretty quick and it made all the difference catching mine early.

Sounds like you caught yours earlier than a lot of folks do. That symptom journal thing is smart, wish I'd done that instead of just telling my doctor "yeah I feel kinda off." Hope the treatment plan is working out for you.

Joe had some of those same digestive issues before his diagnosis and we kept thinking it was just getting older, you know? Really wish we'd pushed harder on imaging sooner like you did.

Sorry if this was asked before but I'm really worried about my stomach now too. I had the chest xray for my lungs but nobody really talked to me about what else to watch for and now I'm reading this and getting kinda nervous.

Did you have any stomach pain before they found the fluid or did that come first? I'm asking because I've had this weird bloated feeling after eating for like a month or so and I didn't think it was related. My doctor said it was probably just getting older, I'm 68, and I figured he was right but now I don't know.

The thing about the long latency period really gets to me. I worked on wiring in some nasty old buildings back in the 70s and 80s too, and it's just sitting there in my chest waiting I guess. Thanks for posting this because people really do need to know about the belly symptoms too.

My father-in-law was just diagnosed in September, so we're still pretty early in this. He has pleural but reading your post hit different because his initial symptoms got written off as just getting older too. Doctors kept telling him it was probably just acid reflux or his back acting up.

What really stands out to me from what you're saying is how long it took before anyone took it seriously. He was complaining about chest tightness and shortness of breath for like six months before someone actually ordered imaging. By then the fluid buildup was already significant. We're kicking ourselves now because he mentioned these things to his regular doctor multiple times and nothing happened until his wife basically forced him to go to the ER in a panic.

The symptom journal thing is smart. We didn't think to keep track of when things started or how they progressed, so now it's hard to piece together the timeline. The latency period you mentioned is what terrifies me honestly. He worked in construction in the late 70s and early 80s, so we're looking at almost the exact same window as you.

Can I ask about the CT scan? Was it flagged immediately or did your doctor have to look at it more carefully? We're trying to understand what questions to ask at his next appointment because we don't want to miss anything. Also wondering if the peritoneal diagnosis changed your treatment plan compared to what they'd recommend for someone with lung mesothelioma.

Thanks for sharing this. It's actually helpful to read from someone further along in the process.

yeah my brother had some of those same things before they figured it out. he kept saying his stomach was killing him and we all just thought it was his diet or something, you know how it is. he'd complain about not fitting into his clothes and we joked about him getting older but looking back there was definitely something going on that wasnt normal.

the thing that got us moving was when he couldnt even drive long hauls anymore without needing to stop and lay down. thats when we knew something was really wrong because my brother loves his truck, he wouldnt complain about that stuff unless it was bad. took him to his regular doctor in like June and they kinda brushed it off at first but we pushed for the ct scan and thats when they saw the fluid buildup. stage II when they caught it.

so yeah what your saying about pushing for imaging makes total sense. doctors dont always connect the dots especially if they dont know about the asbestos exposure. my brother worked construction back in the day and never really thought about it again until the diagnosis. your post might actually help someone recognize this earlier than my brother did because honestly we lost almost a year just thinking it was stomach issues.

The abdominal presentation is so tricky because GI docs will reflexively think IBS or acid reflux first, and it takes forever to get to imaging. My dad had the pleural form but we spent months with his primary care just treating him for GERD before anyone ordered a chest CT in March. By then he was already Stage IV. Your symptom journal is actually brilliant because it gives you that timeline, which is exactly what oncologists need to see the pattern.

One thing I've noticed managing his palliative care is that the fatigue piece gets underestimated. It's not just tired, it's this bone-deep exhaustion that doesn't respond to sleep because it's the disease itself driving it. The nausea and appetite loss compounds everything because then they can't get adequate nutrition to fight back. We've had to get really intentional about small frequent meals, sometimes just protein shakes because actual food feels impossible. His oncologist suggested we try ginger supplements and smaller portion sizes spread throughout the day instead of three meals, and that's helped more than I expected.

The weight redistribution thing you're describing, that localized swelling rather than general weight gain, is such a specific finding. It's genuinely one of those red flags that should trigger imaging immediately but so many clinicians miss it because they're not thinking peritoneal. Did they do a paracentesis to confirm, or did imaging plus clinical presentation get you straight to biopsy? That matters because some docs still want tissue confirmation and others will proceed with treatment based on imaging alone.

You're right that peritoneal gets overlooked in the general awareness. Occupational exposure history should be the thing that makes someone think about it but that requires actually asking about work history, which...yeah. Glad you're pushing this message out there.

My dad's presentation was so different from yours but reading this really hits home. He had the lung involvement so it was more about the chest pain and this persistent dry cough that wouldn't quit, but the abdominal symptoms you're describing... that's actually something we didn't realize until much later. When they did his initial staging scans in March they found some peritoneal involvement too, which the oncologist said wasn't uncommon even with the pleural diagnosis.

The fluid buildup piece resonates because we dealt with that heavily. He had two thoracentesis procedures before we pivoted to palliative in October, draining what felt like gallons of fluid. The relief was temporary but real. I wonder if your team is doing any fluid management or if they're monitoring the ascites progression with follow-up imaging.

Your point about the latency period is so important. People don't realize how long asbestos sits in your body before anything shows up. My dad was a construction supervisor in the 70s and 80s too, different industry but same exposure window. Forty plus years feels insane until you actually see it happen to someone you love and then it makes terrible sense.

The symptom journal thing you did is smart. We started keeping detailed notes once he was diagnosed but I wish we'd had that baseline from months before. It would've helped us recognize the pattern earlier instead of assuming it was just getting older. Push for that imaging if you haven't already and if they're not doing regular follow-ups demand it. Peritoneal can progress differently than lung involvement and honestly the imaging is what actually tells the story.

How are you managing the pain and nausea now? That was one of the hardest parts for my dad to deal with even on good palliative protocols.