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Pulmonary Sarcoidosis: How are you dealing with it?

Lung Health | Last Active: Sep 23, 2023 | Replies (113)

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@colleenyoung

Hi @sharonp51, welcome to Mayo Clinic Connect. You'll notice that I moved your message to this existing discussion about pulmonary sarcoidosis. I did this so you can meet other members like @suscros68 @martindale @sarcoidosis @estrada53 @bboxer @chesneydell1965 @riverotter @ryman @irene5 and more.

Here are additional discussions you may be interested in:
- Sarcoidosis https://connect.mayoclinic.org/discussion/sarcoidosis/
- Small lung nodules: How often should they be scanned / monitored? https://connect.mayoclinic.org/discussion/lungs/
- Lung nodules & scared! https://connect.mayoclinic.org/discussion/lung-nodules-scared/

Sharon, can you tell us a bit more about you? When were you diagnosed with sarcoidosis? What treatment have you had? What is your biggest challenge or concern at this time?

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Replies to "Hi @sharonp51, welcome to Mayo Clinic Connect. You'll notice that I moved your message to this..."

Hello ! I was diagnosed 2017. I had a lung nodule and was sent for a PET scan. The only thing that “lit up “ as the nodule It was then suggested to remove/biopsy the nodule. I had an upper lung Lobectomy, apparently the nodule was located in an area that couldn’t be reached. This nodule was biopsies and found to be an inflammatory granuloma, send for culture, took 6 weeks and grew nothing. (I should mention I have multiple inflammatory conditions). I have no lung symptoms other than shortness of breath from Childhood Asthma
I had a repeat scan after 9 months and it was clean, then 6 months later with new tiny lesionsI then 1 yr later, i have another nodule, 15x17mm same lung, only lower spot this time. I was put on a round of prednisone and “asked” if I wanted a bronchoscopy or repeat CT scan in 3 months. I am not a Dr, so I am contemplating finding a new one or deciding what to do.