Sally Lash

Hi all, Not sure how to start my introduction so I’ll dive right in. I was diagnosed with Lupus years ago. My lupus has affected my lungs. My lungs are kind of mess; history of pneumonia, pleurisy, interstitial lung disease, and sarcoidosis. Because of all this I see a pulmonologist and have a cat scan every six months. I’ve had 3 bronchoscopes to check that my nodules are all sarcoids, which they all were until recently. Had my cat in June, all clear, started feeling extremely short of breathe in August with a wicked cough,  another cat. This one showed a 2cm nodule in the lower right lobe. It was decided to wait eight weeks for another cat but put on prednisone and antibiotics which can shrink sarcoids. October cat showed no change, November 2 PET, I glowed. The 24th had needle biopsy. Results are non small cell cancer stage 1 but an “aggressive” tumor. Pulmanologist and Thoracic surgeon brought my results to a tumor board. The board felt my lungs are too fragile for surgery and my outcome can filled with complications. Not worth it. First surgeon feels he can do the wedge surgery but thinks I should get a second opinion and go see a radiologist oncologist also. Second opinion thinks I should do radiation but get another EBUS first in case the cancer has snuck into one of the sarcoids. First surgeon doesn’t think I need an EBUS, either “do surgery or do radiation”. From what I understand if I get radiation I can not get surgery if it comes back. Is that true? Seeing radiologist on December 22. Very confused about my options, demand an EBUS? Risk surgery? get radiation? Also the tumor is aggressive, it grew in two months and it’s been almost two months since I was diagnosed. As I write this I kind of see that I need to make a decision and find someone who will help me implement my wishes. I know none of you are doctors but I’d love your opinions. Thank you for reading this long and rambling post.