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Multiple biopsies with no answers
Hi! Has anyone had multiple lung biopsies and still not gotten a diagnosis?
I’ve had 2 bronchoscopic biopsies and 1 CT guided. They’ve been able to rule out cancer thankfully. Outside of that, they have been non-diagnostic. All of this has been contained in my right lung. I was on 2 and 1/2 months of strong steroid taper and my health improved.
Now 3 weeks off steroid, CT is showing new small nodules in my left lung. I’ve been experiencing sharp pain in my left chest area, can’t take a deep breath without pain. I’ve had low grade fever and some minimal non productive coughing. I’m now considering a 4th bronchoscopic biopsy. Just wondering if anyone has had a similar experience?
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Hi ladybug...has your doctor suggested a PET scan with contrast? And have you had bookwork done? Sandy
@ldybug0505 Welcome to Mayo Connect. Through all of these "adventures" has anyone suggested that you may have an infection? Some infections present as lung nodules, and your description of the low grade fever, cough, increase in nodules after steroids...suggest that may be the case.
Have any of the biopsy samples been sent to be cultured for infectious material - mycobacteria, pseudomonas or aspergillosis? Most of these do not show up in bloodwork if isolated to your lungs.
Second, the description could also point to an inflammatory process so Sandy's suggestion of having bloodwork done is a good one.
Sue
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1 ReactionI have the same situation and they tell me it’s Sarcoidosis
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1 ReactionI am going down this road too. On Halloween of 2022, I went to the ER with trouble breathing. They did a CT Scan and found a mass measuring 3.2 x 3.9 cm. Suspicious for malignancy. After a bronchoscopy and a EBUS procedure (bronchoscopy and ultrasound) they cannot determine what it is. Both biopsies were inconclusive. PET Scan showed an uptake of 13.7 which was extremely concerning. So I was scheduled for a VATS procedure to biopsy the lung on January 5. However, the CT scan that was done on January 3 showed that the mass had shrunk a little so it was determined that it could not be cancer. The risk of doing the VATS procedure did not justify trying to find out what this mass is. The mass has also collapsed part of my lung. I was on oxygen 24/7 but now have weaned off of it. My next CT Scan is in November. I asked for another CT Scan is April and they are now calling it a "stable mass" which means it is neither growing nor shrinking. I would like to know what it is.
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1 ReactionLadybug,
What state do you live in? I live in Colorado.
I live in Arkansas. Your journey sounds so familiar. I’m sorry you e had no answers either. I am headed to Mayo now for another biopsy. It’s my first one at their facility. I am hopeful this will lead to some answers.
Appreciate your response.
Yes, I’ve had 2 pet scans locally. The first showed strong inflammation in the largest mass. The second about 6 weeks later and after starting steroids the inflammation level lowered and a follow up CT showed the large mass start to break up. I’ve also had a pretty extensive infectious disease work up, but still no solid answers. Just so confused about the new nodules forming while I was on steroids.
Thank you for your response. I’ve had an extensive work up for infectious diseases. Mayo has even re-reviewed my previous biopsies but still inconclusive. I am headed back up for another biopsy and really hopeful that it will bring answers.
Please let me know what you find out. Thanks.