Benign carcinoid tumor in bronchi tube

@nannybb I've had a pet/ct scan I've had 2 bronchoscopys 2 biopsys liver mri and also ct and xray I've had 40% of tumor removed and I've also had a pulmonary function test which came back excellent I've had all these tests done since end of July so I'm thinking is there more scans needed before surgery or do they have it all already

@jessie1990 I'm thinking that's a question for your surgeon and their team. I know my tumor changed after my biopsy. My doctor informed me of the fact. I still wonder if he had done one more CAT would he still have operated. So I honestly have zero idea. Asking them might be best.

@jessie1990
I hope your daughter becomes a vet. 😊

I didn’t have surgery since I have too many tumors to remove but I would think they have what they need with the scans and biopsies unless they run another scan to look for growth. If you didn’t have the DOTATATE PET scan specifically for NETs they might run that.

@nannybb
I always had asthma when I was sick or exposed to many animals. Then in my 20s I became so sensitive to fragrances that caused coughing, shortness of breath, mucus, bronchitis, etc. I just thought it was allergies and chemical sensitivity. In 2008, I had my first chest CT scan for chronic bronchitis. They discovered over 50 nodules scattered across all lobes. They first said it presented as metastatic cancer that had spread to my lungs but where was the primary cancer? They also said it could be benign as a result of valley fever or some other healed virus. The latter didn’t make sense to me since they were still growing very slowly. I was monitored with CT scans after I declined a biopsy because they couldn’t reach the largest nodule without cutting my chest wide open. Uh no! After 4 years I declined CTs as most radiologists, oncologists and pulmonologists guessed it was likely benign (mainly because I was still alive and thriving). I pointed out that even if benign they would eventually be a problem as they grew and displaced healthy tissue or caused blockages.

I was diagnosed with breast cancer in 2012 but stage 1 w/BRCA2 mutation so that wasn’t related. Fast forward to 2020 when my breast cancer came back. The CT/PET scan showed most lung tumors had doubled in size in 12 years (that’s very slow growing) so they could now biopsy the largest with a needle and the PET indicated it was cancer. They wanted to know if the lung tumors were related to the breast cancer. The biopsy came back as a typical carcinoid not related to BC. I read up on carcinoids and when I used the term lung NETs to my breast oncologist, he said, “The what?” Hmmm. Maybe I need someone else for the lungs. It was my research on lung NETs that had me baffled why no one else had so many tumors and why didn’t any doctor ever guess lung NETs? It just didn’t make sense to me. They were missing something. That’s when I found the DIPNECH study and the cases sounded more like my case. DIPNECH is multiple benign neuroendocrine tumors that can turn into lung NETs and mine did. DIPNECH also has my respiratory symptoms and typically is diagnosed in middle-aged non-smoking women after years of misdiagnosis as asthma, COPD, etc. Bingo! The official diagnosis came from the NETs team based on the biopsy, history, nodule pattern and symptoms.

@nannybb That would be great. I have known a few Catholic nuns. They are tenacious and entertaining. Sounds like a fun lunch.

@nannybb Atticus sounds great. I am just a dog person. Big is definitely more regal than I am. He is a step up in class for me.

@jessie1990 how long ago was everything?

@nannybb I have always had those basics prior to any surgery.

Right? So much has changed it seems.

@tomrennie haha...I doubt that. I bet you are viewed as royalty to him. 💕