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what symptoms made you think something was off before the diagnosis

Patient · · 27 views
so I'm about 8 weeks out from my diagnosis now and looking back I realize I was ignoring stuff for like a year before I finally went to the doctor. started with this nagging cough that wouldn't go away, nothing crazy just kinda persistent and annoying. then I noticed I was getting winded easier than usual, like taking the stairs at my house would leave me breathing heavy and that never used to happen. figured it was just getting older, right, I'm 67 and retired so I wasn't doing much anyway.

what really got me was the chest pain. not like a heart attack thing but more like a dull ache right here on my left side, kinda felt like I slept on it wrong or something. and I was always tired, like I'd wake up after 8 hours and feel like I only got 3. my wife kept saying go to the doctor already but you know how it is, you don't wanna be that guy.

finally went in March 2024 because the cough was getting worse and the doc ordered a chest X-ray just to check things out. that's when they saw something on my lung and sent me for a CT scan. biopsy confirmed it was meso in December.

anyway if you're noticing any of that stuff don't do what I did. get it checked out sooner rather than later. the earlier they catch it the more options you got.

9 Replies

Attorney ✓ Expert Response
What you're describing, that combination of persistent cough, exertional shortness of breath, and that dull pleuritic chest ache, is almost textbook for pleural mesothelioma in its earlier presentation. And almost everyone I've worked with over the years says the same thing you did: they wrote it off for months, sometimes years.

The fatigue piece is something that doesn't get talked about enough. It's not just tiredness, it's this deep bone-level exhaustion that sleep doesn't fix, and it often shows up before the more obvious respiratory stuff does.

From a legal standpoint, I want you to know that the timeline you're describing actually matters. Courts in most jurisdictions use what's called the "discovery rule" when calculating statutes of limitations, and that March 2024 chest X-ray, the CT, the biopsy in December... that sequence of events helps establish when you reasonably could have known what you were dealing with. Most states give you somewhere between one and three years from date of diagnosis to file, though it varies.

If you worked in construction, shipbuilding, auto mechanics, or manufacturing before roughly 1980, there may be trust fund claims worth looking into. Asbestos bankruptcy trusts have paid out over $20 billion collectively to claimants since the 1990s and some of those funds are still active.

Consult an attorney for your specific situation, but don't wait on that part either. The same instinct that delayed the doctor visit has a way of showing up again.
2 found this helpful
Medical ✓ Expert Response
What you're describing is so typical of how this disease presents, and I wish more people understood that before they end up in your situation. The persistent cough, exertional dyspnea (that's the breathlessness on the stairs you mentioned), the dull pleuritic chest pain... these are textbook early warning signs that almost every patient I've seen has described in exactly the way you just did. And almost every one of them waited.

The fatigue piece is something that doesn't get talked about enough. It's not laziness or getting older, it's often a real physiological signal. Cytokines (inflammatory proteins the tumor releases) can cause profound fatigue well before a person feels "sick" in any obvious way.

What I tell people now, and I started doing this more deliberately after the ASCO 2022 data on early detection came out, is that any respiratory symptom lasting more than 4 to 6 weeks in someone with known asbestos exposure history should get a chest imaging workup. Full stop. Your wife was right to push you. The fact that you went in March and didn't get a confirmed diagnosis until December tells you something about how long this process takes even after you do the right thing.

Please make sure your oncologist knows your full occupational history if you haven't already talked through it in detail. That context shapes everything about how your care team thinks about your case. Talk to your own doctor about what your timeline means for your specific treatment options.
2 found this helpful
Medical ✓ Expert Response
Thank you for posting this. The symptoms you described, especially that combination of persistent cough, exertional dyspnea (breathlessness with activity), and pleuritic chest pain (that dull ache on one side), are really the classic presentation we see with pleural mesothelioma and they are almost always attributed to something else first. Aging, deconditioning, a muscle strain. I've sat with so many patients who told me almost exactly what you just wrote.

The fatigue piece is something people underestimate. It's not just tiredness, it's often a systemic inflammatory response the tumor is driving, and it can precede a diagnosis by a year or more. The MARS trial data actually touched on how late most patients present relative to when symptoms started.

Eight weeks out from diagnosis is still very early days. The treatment landscape has genuinely shifted in the last few years, especially since the FDA approved nivolumab plus ipilimumab (a dual immunotherapy regimen) for unresectable pleural meso in 2020. Whether that's relevant to your specific case depends on histology (the cell type), staging, and other factors your oncologist knows better than anyone.

I'd make sure your team includes someone who sees meso regularly, not just a general thoracic oncologist. I've watched patients get a second opinion at a dedicated mesothelioma center in early February and come back with a completely different proposed treatment approach.

Talk to your oncologist about all of this, but know that earlier detection than you had is still in a meaningful range for treatment options.
2 found this helpful
Attorney ✓ Expert Response
What you're describing, that persistent cough and the fatigue that sleep doesn't touch, comes up in almost every client intake I've done over 20 years. The chest pain being described as dull and positional is something I hear constantly, and people almost always chalk it up to a muscle strain or sleeping wrong. You're not unusual in that at all.

The thing that tends to delay diagnoses the most is that these symptoms don't look alarming on their face. A primary care doc seeing a 67 year old with a cough and some shortness of breath is often thinking COPD or cardiac before they're thinking pleural mesothelioma. The gap between your first symptom and your December biopsy is pretty typical actually. I had a client in 2019 who had 14 months between noticing symptoms and getting a confirmed diagnosis, and his occupational history in shipbuilding was sitting right there in his chart the whole time.

From a legal standpoint, and I'd encourage you to consult an attorney for your specific situation, that timeline you laid out matters. When you first noticed symptoms, when you were diagnosed, and critically when you can identify the asbestos exposure... those dates shape what options may still be available to you. Statutes of limitations vary significantly by state and the clock typically runs from diagnosis, not from when you think you were exposed.

So your instinct to document everything now, while it's fresh, is a good one.
2 found this helpful
Patient
Yeah that makes sense, the symptoms are so generic it's easy to blow 'em off as just getting older or whatever. My doc even said the same thing after the diagnosis, that if I'd come in sooner when it was just the cough he probably would've caught it faster. Wish I'd listened to my wife instead of being stubborn about it.
Family
I'm really glad you're sharing this because those early signs are so easy to dismiss, especially the fatigue piece. My dad had almost the exact same timeline and I missed it too even though I should've known better. He had that persistent dry cough starting around mid-2024, kept saying it was just post-nasal drip, and I believed him because why wouldn't I. Then come fall he was getting winded walking to his car and I remember thinking okay that's not normal for him but we were all busy and I didn't push hard enough.

The chest wall pain you described, that pleuritic sensation where it feels worse with breathing or movement, that's actually a really common presenting symptom with pleural involvement. What I've learned managing my dad's care since his diagnosis in March is that pleural mesothelioma often presents with that vague chest discomfort before people even realize it's lung-related. He'd describe it exactly like you did, just an ache, sleeping wrong kind of feeling.

One thing I wish we'd done earlier was get imaging at that first visit instead of waiting. We ended up at Northwestern in April and they were able to stage him pretty quickly once we had the CT and PET scans done. The fatigue though, that one still gets me because it's so nonspecific. People chalk it up to age or depression or just life, but with meso it's this bone-deep exhaustion that rest doesn't really fix. Dad was sleeping 12 hours and still dragging.

You caught it, you got the diagnosis, and now you can actually do something with that information. That matters. How are you doing with the treatment planning right now?
Family
yeah the persistent cough thing is what got my mom too, she had it for like 8 months before anyone took it seriously. and that fatigue is so real, it's like nothing helps no matter how much you sleep. glad you're sharing this because people need to know it's not just getting older.
Patient
Yeah your mom's story sounds way too familiar. Eight months though, that's rough. Mine was basically the same deal where everyone just kinda brushed it off as normal stuff until it couldn't be ignored anymore. The fatigue thing is wild, like my body was running on fumes even when I'd slept like a rock. How's your mom doing now, is she past the worst of the treatment stuff?
Family
You know what I wish I'd done earlier? I taught for 34 years and I was always telling my students that ignoring a problem doesn't make it go away, it just makes it bigger. Funny how we don't take our own advice, right? Joe's been dealing with this since September and honestly one thing that really helped us was keeping a little notebook of when symptoms got worse or better. Sounds simple but when you go to appointments you can actually show the doctor "okay this was happening every other week in October, now it's happening three times a week." It made the whole thing feel less like we were imagining stuff and more like actual data, if that makes sense. The chest pain thing you mentioned... Joe had that too but he kept thinking it was just his old baseball injury acting up. Turns out it was fluid buildup on his left side the whole time. So yeah, don't wait like we did.

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