Has anyone experienced recurrent pleural effusion with no clear cause

@pleuralmystery I posted my comment today (2/15). I had a mechanical pleodesis with VATS and was in ICU for 8 days). They kept me longer to make sure that the fluid was completely gone. It was the longest eight days of my life.

@ducttapedarkling

Have they done a lung biopsy? They could never find anything in my plural fluid they only found mesothelioma after a biopsy

Hi! I see your comment is almost a year old, and I was hoping for some answers too. I’m 61, healthy and work out 5 days a week, but in June I was sent to the ER for this, and now have gone for 3 thoro’s in 1 1/2 months. I have had so many blood and fluid tests and it’s still a mystery. Within the past week, I think I’m feeling the same things I felt before. Have you received any diagnosis?

@curlz I went through something similar last year. They decided mine was related to heart failure. Do see a cardiologist. Please know that all forms of treatment may cause issues with the heart.

@curlz
Hi, hello. I’m really sorry you’re going through this. I know how you’re feeling the frustration, the fear, and especially the uncertainty of not knowing what’s causing it.
But I also want to reassure you that if they haven’t found anything and it’s still a mystery, try to take some comfort in that. I never found out exactly why I was having the fluid either, but knowing that it wasn’t cancerous or anything like that helped me move forward.

In my case, I saw so many different specialists trying to figure out what was causing it. I saw cardiologists, rheumatologists, an OB-GYN, pulmonologists, thoracic surgeons, and even an infectious disease specialist. I had so many tests done, including a PET scan, and they ruled out TB, cancer, autoimmune diseases, heart issues, and so many other things.

I was also getting thoracentesis about once a month, and they would drain around two liters of fluid each time. What was crazy was that I really didn’t have many symptoms. The only thing I noticed was some shortness of breath with heavy strenuous activity. The very first time they discovered the fluid, I had more than three liters and had absolutely no symptoms.

I had multiple opinions and spent about nine months trying to figure everything out. Because I was scared, I ultimately opted the less invasive procedure with a interventional pulmonologist. I had a pleurodesis/pleuroscopy with a pleur x catheter and was sent home with drains. A nurse would come to my house every other day, and sometimes every three days, to drain them.

Looking back, I really wish I would have opted for VATS instead with a thoracic surgeon at the Mayo Clinic. With VATS, you’re admitted to the hospital and typically stay for several days with the drains continuously draining while you’re being monitored. I feel like that would have been a better approach for me.

My procedure ended up being about 70% successful, and I was left with two small pockets of fluid. I’m fine now and can live a normal life, but if I could go back and make the decision again, I would have chosen VATS.

I would also ask your doctors if a PET scan would be appropriate for you, especially if you haven’t had one yet. I had one, along with what felt like every test in the world, and nothing was found.

I honestly have my own theory that mine may have been COVID-related because I’m finding more and more people who have dealt with unexplained fluid issues after COVID. I obviously can’t say for sure that’s what caused mine, because I never got an answer, but it’s something I’ve wondered about.

Of course, I’m not a doctor, and I can only speak from my own experience. Your situation may be completely different from mine. But with how quickly your fluid seems to be coming back, I would definitely have a serious conversation with a thoracic surgeon about your options.

I never found out exactly why I had the fluid, but at least I know it wasn’t cancerous or anything like that. And I’m okay with not knowing the “why” as long as I know I’m okay.

If you have any questions about what I went through, please reach out. I’d be more than happy to share my experience with you. ❤️

My hubby has been having enhanced CT scans for the past 4 1/2 years for lung cancer. He had one lobe removed from his left side after a biopsy, and had radiation done on a node in his right lung, all within the first 6 months. He did take Tagrisso for 3 years (on a study), for the left EGFR lung node removal area. For the past year and a half CT scans, there have been showings of nodes in mainly the right lung. He did have 2 spots that needed attention and they biopsied one in November 2025 to find out it was glandular type, so had radiation done on that spot and the one nearby. He just had another CT scan and there appears to be more spots now showing in both lungs and has a followup report tomorrow with the radiologist doctor to find out, where/what will be the next direction?? Being the last 2 CT scan were for his lungs, chest and abdomen, the Doctor did say that the cancer seemed to be just contained in the lungs?? Has anyone had such a bizarre experience and if so would greatly appreciate your experience. Many thanks!

@troubletwo I've had 3 kinds lung cancer (all EGFR mutated adenocarcinoma). each cancer was in a different lobe and each tumor had a different activating mutation. both of my lungs are also affected. I still have many pulmonary nodules. you could request a liquid biopsy (it's just a blood test) but it looks for DNA from tumors in the blood and is a noninvasive test. they can be expensive, so have your doctor double check that your insurance covers it. let us know what the doctor recommends in hubby's appointment tomorrow.