Benign carcinoid tumor in bronchi tube

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

@jessie1990 how long ago was everything?

@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
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.

@jessie1990 Did any of your pet scans use a contrast? If so, do you know what type?

@californiazebra @nannybb @jessie1990 I just got off a Mayo NETs support group call. A lady was just diagnosed with lung carcinoid tumors. She was told by a Thoracic Surgeon that wants to remove a lobe or two. I tried to present what you folks all just taught me. But we talked about finding a NET specialist. Others agreed in general. She is in Louisiana. I found a NET Carcinoid Tumor Surgery Specialist there. Never saw that specialty before. Thanks for the education. We just helped someone.

@californiazebra Thank you so much for all that information. I looked up DIPNECH as soon as you mentioned it. I have to say, you are tenacious. And it's a good thing you are! I am kind of amazed the breast cancer was not related. I can't remember if I told you a rare form of it is in my family (grandmother and mother). It presents on the outside as a sore on the nipple. Both of my grandmother's breast were removed and she lived for several years. They only took one of my mother's, and hers came back about 7 years later when my father passed. By then it was in her bones and liver. So you still have a lung (or both) full of NETs that they are just watching for now? Did you ever have any medical background?

@californiazebra Thank you so much for all that information. I looked up DIPNECH as soon as you mentioned it. I have to say, you are tenacious. And it's a good thing you are! I am kind of amazed the breast cancer was not related. I can't remember if I told you a rare form of it is in my family (grandmother and mother). It presents on the outside as a sore on the nipple. Both of my grandmother's breast were removed and she lived for several years. They only took one of my mother's, and hers came back about 7 years later when my father passed. By then it was in her bones and liver. So you still have a lung (or both) full of NETs that they are just watching for now? Did you ever have any medical background?

@tomrennie I was going to ask that as well. Also Hopeful are your doctors/surgeons have specialty in NETs /Carcinoid tumors?