@nannybb
I agree with you that medical stuff is interesting. I wanted to be a veterinarian growing up because I loved animals. Unfortunately I’m allergic to most so that was off the table. I could have started a poodle (hypoallergenic) clinic. Haha

I’ll answer tomorrow about how DIPNECH and lung NETs presented. My screen froze and I lost the first response.

@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.