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How long did it take from first symptoms to diagnosis?

Patient · · 402 views
I've been having persistent chest pain and a cough that won't go away for about 4 months now. My doctor initially thought it was pneumonia but antibiotics didn't help. I worked at a shipyard in Norfolk for 22 years.

Now they want to do a biopsy. I'm scared and wondering, for those of you who were eventually diagnosed, how long did the whole process take from first symptoms to actual diagnosis? I feel like I've been in limbo forever.

8 Replies

Patient
Robert, it took me about 6 months from first symptoms to diagnosis. I had the same experience. They thought it was pneumonia first, then maybe COPD. It wasn't until a CT scan showed pleural thickening and fluid that they started suspecting mesothelioma. The biopsy confirmed it.

The waiting is the hardest part. Try to stay as informed as you can without going down the Google rabbit hole. And know that getting the biopsy done is the right move, it's the only way to get a definitive answer.
8 found this helpful
Patient
Sorry if this was asked before but i'm kinda in the same boat right now, diagnosed just last month after like 3 months of doctors being confused. the waiting is the worst part honestly, but at least you're getting answers now with the biopsy. hang in there.
3 found this helpful
Patient
took me about 8 months from when it started til they figured it out. lot of back and forth with different doctors. the biopsy will give you answers at least.
1 found this helpful
Caregiver
From my diagnosis in August it was about 5 months of tests and back and forth before they confirmed it, so the biopsy should at least give you some closure on what you're dealing with. The waiting part is honestly the hardest, once you know what it is you can at least start making a plan, which helps me feel less like I'm just floating around.
3 found this helpful
Patient
For me it was about 7 months from when I first noticed the abdominal bloating and pain to actual diagnosis in November. I kept a pretty detailed symptom journal from day one, I'd recommend doing that if you haven't already, it really helped when I was bouncing between doctors. The biopsy was honestly less scary than the waiting beforehand. Mine came back positive for peritoneal mesothelioma in Stage II, so at least we had answers after all that uncertainty. One thing I wish I'd done sooner. I asked my pulmonologist specifically about asbestos exposure history during my second visit. They weren't connecting the dots until I brought up the Johns-Manville plant where I worked in the late 70s and early 80s. With your shipyard background that exposure is pretty clear-cut, so make sure whoever's doing your biopsy knows that upfront. It actually matters for how they interpret the pathology. The waiting is brutal, I won't lie about that, but once you know what you're dealing with you can at least start making real decisions about treatment.
3 found this helpful
Family
Joe's timeline was pretty similar, chest pain and that stubborn cough for maybe 4 months before they even mentioned doing a biopsy. And honestly the waiting part was harder than the actual diagnosis, if that makes sense. Once we finally had answers it was like... okay, now we know what we're dealing with and we can actually do something about it.

I think what helped us was asking lots of questions at every appointment. After 30 years teaching I learned that sometimes you gotta be your own advocate, you know? Don't just accept "come back in a month." Push for the next test, ask what they're looking for. Your shipyard background, they should be taking that history seriously because that's a big piece of the puzzle.

The biopsy will give you answers and that's actually a good thing even though I know it feels scary right now. How are you holding up otherwise?
Medical ✓ Expert Response
Robert, the shipyard history you mentioned is really significant context here. 22 years of occupational asbestos exposure puts you in a category where your care team should be thinking about mesothelioma specifically, not just ruling out more common things.

What the others here experienced. That 3 to 8 month diagnostic window, actually lines up with what we see clinically. Mesothelioma (cancer of the lining around the lungs or abdomen) mimics pneumonia and COPD early on, which is why it gets missed at first. The SEER database shows median time from symptom onset to diagnosis is often 4-6 months for this reason.

The biopsy is the right next step. Imaging alone can't confirm it. And if the pathology comes back, ask specifically whether they're doing immunohistochemistry (special staining that helps distinguish mesothelioma cell types). It matters for treatment planning.

Please make sure you're seeing a thoracic oncologist, not just a general pulmonologist, especially given your exposure history. Talk to your own doctor about all of this. The waiting is genuinely hard and I won't pretend otherwise.
3 found this helpful
Patient
Yeah, that shipyard work, I think about it all the time now. We weren't wearing much of anything back then, just did the job. The biopsy's scheduled for next week and honestly knowing it could take a few more months to get answers is... well, it's better than not knowing what I'm dealing with. At least my doc is taking the asbestos history seriously now instead of just treating me like I've got a bad cold. Thanks for spelling that out, helps to know I'm not crazy for being worried about this.

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