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peritoneal vs pleural symptoms - what I'm actually experiencing

Patient · · 67 views
So I got diagnosed in November with peritoneal meso, Stage II, and I keep seeing posts that mix up the symptoms because most people think meso is just lung cancer. It's not, at least not for me.

I worked at the Johns-Manville plant in Cleveland from 1978 to 1985, insulation division. Didn't get sick until this year, which tracks with what I've read about the latency period being 20 to 50 years.

My symptoms were different than what pleural patients describe. I had this persistent abdominal swelling that started around August, and I thought it was just getting older or eating too much. Then the pain got worse, especially after I ate, and I started having this feeling of fullness even when I hadn't eaten much. My oncologist said that's the tumor pressing on the peritoneum and organs in the abdomen. I also had some weight loss but not dramatic, maybe 12 pounds over three months before I noticed it.

Pleural patients tell me they get chest pain and shortness of breath because the tumor's growing on the lung lining. That's not what I had. No cough, no breathing issues. I did have some digestive problems and fluid buildup, which is more typical for peritoneal.

The thing that gets me is I didn't feel that sick until I went to the ER in October for what I thought was maybe a hernia or something. They did a CT scan and that's when they found the tumors. If I hadn't gone in for that scan I probably wouldn't have known for longer.

I keep a symptom journal now because my oncologist wants to track how I'm responding to treatment planning, so if anyone wants specifics about what to watch for with peritoneal I can reference that.

12 Replies

Patient
man that abdominal swelling thing is what got me too, though mine turned out to be pleural. good call keeping that journal, my docs said the same thing about tracking stuff. glad they caught it when they did.
Medical ✓ Expert Response
What you're describing about the diagnostic pathway is something I see a lot in my work, and it matters more than people realize. Peritoneal cases get missed so often because the abdominal symptoms mimic so many other things, bowel issues, ovarian cysts, hernia exactly like you said. A 2021 analysis in the Journal of Clinical Oncology found median time from first symptom to peritoneal meso diagnosis was around 6 months, which is... a long time when staging matters this much.

The symptom journal you're keeping is genuinely one of the more useful things. I started recommending that to clients after a patient I worked with in 2019 brought hers to a HIPEC consultation at Cleveland Clinic and the surgical team said it actually helped them calibrate her treatment timeline. Talk to your own oncologist about whether HIPEC is on the table for you, because for Stage II peritoneal it sometimes is.

And the distinction you're drawing between peritoneal and pleural presentations, that's real clinical knowledge and it's worth sharing here.
3 found this helpful
Patient
Yeah, that 6 month lag is exactly what worries me now. I keep thinking about all those months I was just dealing with it, you know, assuming it was normal aging stuff. My journal actually shows I had that initial bloating back in July, so by the time they caught it in November I was already looking at four months of progression. I haven't actually dug into that JCO study yet but I'm going to pull it because understanding the diagnostic delays might help me figure out what questions to ask my surgical team about the HIPEC timeline. Did you find in your work that patients who caught it earlier had better outcomes with the surgery, or is it more about overall health status?
Medical ✓ Expert Response
Your description of the symptom distinction is really well laid out and I hope others find it. The abdominal fullness and post-meal pain pattern you're describing is so consistent with peritoneal presentation and yet so easy to dismiss as GI issues, which is why the diagnosis delay is unfortunately common. A 2023 analysis in the Journal of Surgical Oncology looked at peritoneal meso patients and found median time from first symptom to diagnosis was over 6 months. Six months. And it was almost always because the abdominal symptoms got written off as something mundane first.

The latency piece you mentioned is real too. Forty-plus years from Johns-Manville exposure to presentation is completely within the documented range, and the peritoneal form specifically tends to show up in people with what researchers think was more ingestion-route exposure rather than purely inhalation, though honestly the mechanisms are still being studied.

I'd ask your oncologist specifically about whether HIPEC (hyperthermic intraperitoneal chemotherapy, where heated chemo is delivered directly into the abdominal cavity after surgery) is part of the conversation for your case. The Sugarbaker protocols out of Washington Hospital Center in the early 2000s really shifted outcomes for Stage II peritoneal patients who are surgical candidates, and not every oncologist brings it up proactively.

The symptom journal is genuinely one of the most useful things you can do right now. Patterns over time are data.

Talk to your own oncologist before drawing any conclusions from what I've shared here, but your instinct to document carefully is the right one.
3 found this helpful
Patient
I appreciate you looking at that study, Dr. Chen. The six month median actually lines up with what I experienced - August to November is almost exactly that. What I'm trying to figure out now is whether that delay affects staging or prognosis at diagnosis. Like, does the tumor progression during those months of misdiagnosis change what treatment options look like? My team is discussing HIPEC surgery but I haven't found clear data on whether earlier detection would have changed that recommendation.
Medical ✓ Expert Response
Patricia, the question you're sitting with about whether earlier detection changes outcomes is one I've seen cause a lot of distress in my clients, and I want to gently offer something that sometimes helps. There's a difference between understanding the timeline intellectually and making peace with it emotionally, and those are two separate pieces of work.

What I've noticed in our Thursday support groups is that people often get stuck in the "what if I'd gone in sooner" loop, and it can really take over. One woman I worked with in 2021 spent about six weeks journaling specifically about that question, and what she found was that writing it out daily actually helped her move through it rather than just circle it.

The symptom journal you're keeping, that's already doing something. It's putting you in an active role. That matters psychologically, not just medically.
3 found this helpful
Medical ✓ Expert Response
Patricia, the question about whether earlier detection at Stage I would have changed your treatment options is one I get asked a lot, and honestly the answer is more nuanced than most people expect.

For peritoneal specifically, the DREAM trial data published in 2019 showed that cytoreductive surgery combined with HIPEC (that's heated chemotherapy delivered directly into the abdominal cavity during surgery) had meaningfully better outcomes in patients with lower peritoneal cancer index scores, which tends to correlate with earlier stage. So yes, staging does matter for surgical candidacy. But here's what people don't always realize: some Stage II peritoneal patients are actually better surgical candidates than Stage I patients with diffuse disease spread. The PCI score your surgeon calculates tells more of that story than the stage number alone.

The August to November window you mentioned, that 12 pounds and the post-meal fullness, I'd absolutely bring that detailed timeline to whoever is doing your surgical evaluation. The Peritoneal Surface Oncology Group International has published criteria on what makes someone a good HIPEC candidate and that symptom progression timeline can actually inform how aggressively the disease is behaving.

Talk to your oncologist about getting a formal PCI assessment if you haven't already. That number will tell you more about your options than the stage label will.
2 found this helpful
Family
This is such an important thread because I think a lot of people, even family members, don't realize how different the two types actually present. My husband Joe was diagnosed in September and started immunotherapy in November, and his pleural symptoms were nothing like what you're describing here. He had that classic chest tightness and cough that wouldn't quit, whereas you're dealing with something way more internal and harder to pin down.

What really stuck with me from your post is the ER visit being the turning point. I spent 30 years teaching kids how to advocate for themselves in class, and I keep telling Joe the same thing now, that sometimes you just have to push to get the imaging done. Nobody wants to sound like they're overreacting but those scans saved your timeline. I wonder if part of why peritoneal gets missed more is because people assume abdominal stuff is digestive or normal aging, like you said. With Joe's pleural symptoms it was obvious something was wrong with his lungs. Yours could've easily been written off forever.

How are you doing with the treatment planning so far? And if you're comfortable sharing from that journal, I bet Patricia and others would find it really useful to see the actual timeline of what you were experiencing month to month.
Patient
Your symptom timeline actually matches what I've been tracking in my own journal pretty closely. The abdominal swelling was my first red flag too, started around late July for me, and I also dismissed it as weight gain or something dietary. I kept a detailed log starting in September once the pain got consistent, noting when it was worse and what I'd eaten, because I was convinced it was something with my stomach or intestines.

The postprandial pain you mentioned is exactly what I'm experiencing. My GI doc actually referred me to oncology because he said the pattern didn't fit typical gastric issues. That was mid-October. By the time they did the CT I was already having the bloating sensation even on an empty stomach, which was different from early on.

I'm also Stage II and I'm currently in the evaluation phase for HIPEC surgery at Cleveland Clinic. My surgeon wants to do the cytoreduction with heated intraperitoneal chemotherapy, and honestly the research on peritoneal cases shows better outcomes with that combination than either alone. The latency thing you mentioned about the 20 to 50 year window is exactly what the Johns-Manville exposure literature shows, and yeah, that factory had significant asbestos contamination in the insulation products they manufactured.

One thing I'd say about the symptom journal is it's been invaluable for my treatment team. I track pain location, intensity on a scale, what triggers it, fluid retention days, appetite changes, and bowel habits. When I brought that to my oncologist last month it helped them understand the disease progression better than just me saying "I don't feel well." My journal from November through now shows a pretty clear pattern of worsening symptoms that coincided with scan findings.

Have you started any chemotherapy yet or are you still in the pre-treatment workup phase?
Family
Oh wow, thank you so much for breaking this down because Joe's pleural and what you're describing with peritoneal are really different beasts. I think a lot of people lump all meso together and that does a disservice to folks like you who are dealing with something totally different.

Joe's symptoms were the chest pain and that persistent dry cough that wouldn't quit, started around March this year. The shortness of breath came later. But reading your post I'm realizing how lucky we were that his showed up in a way that made us go get it checked. Your story about not knowing until October...that's exactly why I'm always telling people to listen to their bodies even when doctors initially say it's nothing serious. We almost dismissed his cough as just a smoker's thing even though he quit in '98.

The abdominal swelling thing you describe sounds really tough because I imagine that's easy to dismiss as just getting older or whatever. That's the sneaky part of this disease, right? It mimics so many other things. And honestly the latency period is wild. Joe was exposed at a shipyard in the 70s and early 80s, and here we are in 2025 getting the diagnosis. Just insane how long it takes.

I'm really glad you're keeping that symptom journal because that's exactly what Joe's oncologist at Tampa General wanted us doing too starting in November when he began immunotherapy. It actually helps them see patterns you might miss otherwise. Sounds like you're being really proactive about all this which honestly makes such a difference in how you handle treatment...

How are you feeling with the treatment plan they've laid out for you?
Patient
The part about the cough really stuck with me because that's exactly what separates the two so much. Joe's experience sounds really tough, especially with that progression over months. With peritoneal, I didn't have any of that respiratory stuff which honestly made diagnosis harder because my symptoms were easier to dismiss as just normal aging or digestive issues.

How is Joe doing now with treatment? I'm trying to gather as much info as I can about outcomes since we're looking at HIPEC surgery as an option, and I'm wondering if pleural patients have different surgical approaches than what they're recommending for me.
Medical ✓ Expert Response
This is such a valuable post. The peritoneal vs pleural distinction gets lost constantly in general meso discussions and it creates real confusion for newly diagnosed patients trying to make sense of their own symptoms.

What you're describing tracks closely with the clinical picture we see with peritoneal presentation. The ascites (fluid buildup), early satiety, and that post-meal pain are all consistent with peritoneal involvement affecting the mesentery and surrounding structures. The 12 pounds over three months is also significant even if it didn't feel dramatic to you at the time.

The latency period you mentioned, 20 to 50 years, is well documented. The SEER database data puts median latency for peritoneal specifically around 30 to 40 years, so your timeline from the Johns-Manville work through the 1980s to a 2024 diagnosis fits almost exactly.

One thing worth asking your oncologist about if you haven't already, the DREAM study and subsequent work on cytoreductive surgery combined with HIPEC (heated intraperitoneal chemotherapy) showed meaningfully different outcomes for peritoneal patients compared to pleural, so the treatment path really is its own thing. Stage II peritoneal with good performance status can sometimes be a candidate for that approach. I saw a patient last spring who was told she wasn't a surgical candidate at one center and then was reassessed at a high-volume institution and the whole plan changed.

Please do talk to your own oncologist about any of this before drawing conclusions. But your instinct to document and share the peritoneal-specific experience here is genuinely useful to others.
2 found this helpful

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