Benign carcinoid tumor in bronchi tube

Posted by jessie1990 @jessie1990, Oct 30, 2025

Hi I've been diagnosed with a benign typical carcinoid tumor in my bronchi tube in right lung was found when I went to A&E with pneumonia back in July of this year I've had 2 bronchoscopys 2 biopys which showed benign carcinoid tumor I was sent for ct scan mri scan and pet scan pet scan was clear I was put under general anesthetic as my lung specialist said he might be able to remove tumor by going down my throat instead of haven surgery but didn't work but he was able to take 40% of tumor out as it was blocking my air way that's how pneumonia set in the 40% he removed also came back benign carcinoid 1 lymph node was removed and checked also clear now I need surgery to remove the rest I'm so confused as doctor said its a benign tumor then Google is telling me it's a low grade cancerous tumor but doctor nor lung specialist said anything about cancer just said its benign doesnt benign mean non cancerous and can any one tell me how surgery went thank you bless you all xx

Interested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.

nannybb | @nannybb | Nov 6, 2025

In reply to @tomrennie "@nannybb That sounds really cool. I grew up in Philadelphia. I love history. There are also..." + (show)

@tomrennie I bet.
Isn't there a large population of Catholics there? St. Augustine was one of my favoite places to spend time when I lived in Florida. It is SO full of history. I had friends that had lived there for quite some time give me tours. I would love to go back.

nannybb | @nannybb | Nov 6, 2025

In reply to @californiazebra "@nannybb I always had asthma when I was sick or exposed to many animals. Then in..." + (show)

@californiazebra

@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.

Jump to this post

@californiazebra The lung tumor that grew and they did a needle biopsy on....I'm just wondering what lobe was that one in, and did they remove it?

Zebra | @californiazebra | Nov 7, 2025

In reply to @nannybb "@californiazebra The lung tumor that grew and they did a needle biopsy on....I'm just wondering what..." + (show)

@nannybb
I just looked it up. Left lower lobe 2.8 cm. They all grew over those 12 years but this one the most. They destroyed just that tumor with microwave ablation. They can’t remove mine surgically because I have so many. Surgery takes healthy tissue too. Ablation area is just slightly larger than the tumor. I posted a message on this thread a few hours ago about the ablation. More detail there.

If you have one tumor, surgical removal is the gold standard.