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Hi @splendrous
2008-2010: they didn't know what the 50+ nodules were, benign or cancer, so many guesses, all wrong. I declined an open chest/lung biopsy. We monitored with CTs for 2 years, slow growing.
2012: My second pulmonologist who was 73, said he'd never seen so many. I declined more CTs due to radiation. My logic was either it's benign or I'd be gone already if lung mets as some suspected. My new doc agreed.
2013: I now had unrelated breast cancer and the CT/PET showed they had grown. I still declined a lung biopsy.
2020: My unrelated breast cancer returned in my chest wall and the lung tumors had at least doubled in size so large enough to do a needle biopsy. I agreed and was diagnosed with stage 1 lung NETs (typical carcinoids) and advanced DIPNECH. My lungs are peppered with tumors so we can't remove them all.

I have been taking the monthly octreotide injections for 3.5 years now. It appears to be slowing growth in addition to relieving symptoms, but slow growing anyway. The interventional radiologist is watching for one to take off from the pack or behave differently in some way. So far, he destroyed the largest one 2.6 cm with microwave ablation and expects we'll do more in the future. He told me my airways are lined with hundreds or thousands of tiny tumorlets that don't show up on the CT and those cause the symptoms. Those are the ones I especially don't want to grow at all as I'm rather fond of breathing. I'm happy with my treatment.

P.S. Something new is happening in the bottom of my right lung. Looks like new tumors, but could be "debris" because a couple old tumors are blocking air flow there. Unclear so we'll do another CT in 3 months instead of 6. I'll know more at the end of January. This is the problem with 50+ tumors getting larger - even slowly. I also worry that breast cancer may spread to my lungs. That wouldn't be good. Only a biopsy could tell. Busy lungs with a lot to sort out. I'm doing amazingly well despite all of this. I hope to report the same in February. 🙂

Thanks for sharing. You certainly have had quite a journey. I hope the treatment can help your symptoms. Where is the doctor directing your care?

Hi @splendrous
2008-2010: they didn't know what the 50+ nodules were, benign or cancer, so many guesses, all wrong. I declined an open chest/lung biopsy. We monitored with CTs for 2 years, slow growing.
2012: My second pulmonologist who was 73, said he'd never seen so many. I declined more CTs due to radiation. My logic was either it's benign or I'd be gone already if lung mets as some suspected. My new doc agreed.
2013: I now had unrelated breast cancer and the CT/PET showed they had grown. I still declined a lung biopsy.
2020: My unrelated breast cancer returned in my chest wall and the lung tumors had at least doubled in size so large enough to do a needle biopsy. I agreed and was diagnosed with stage 1 lung NETs (typical carcinoids) and advanced DIPNECH. My lungs are peppered with tumors so we can't remove them all.

I have been taking the monthly octreotide injections for 3.5 years now. It appears to be slowing growth in addition to relieving symptoms, but slow growing anyway. The interventional radiologist is watching for one to take off from the pack or behave differently in some way. So far, he destroyed the largest one 2.6 cm with microwave ablation and expects we'll do more in the future. He told me my airways are lined with hundreds or thousands of tiny tumorlets that don't show up on the CT and those cause the symptoms. Those are the ones I especially don't want to grow at all as I'm rather fond of breathing. I'm happy with my treatment.

P.S. Something new is happening in the bottom of my right lung. Looks like new tumors, but could be "debris" because a couple old tumors are blocking air flow there. Unclear so we'll do another CT in 3 months instead of 6. I'll know more at the end of January. This is the problem with 50+ tumors getting larger - even slowly. I also worry that breast cancer may spread to my lungs. That wouldn't be good. Only a biopsy could tell. Busy lungs with a lot to sort out. I'm doing amazingly well despite all of this. I hope to report the same in February. 🙂

What treatment did they prescribe when your tumors were found 16 years ago? How long have you been on octreotide? Along with your symptoms has it kept the tumors from growing? Thanks for sharing.

Followup answer:
My invasive surgery (I’m a relatively healthy 80 year old man) was for a small bowel obstruction on July 1, 2022. It was “laparotomy general surgery” (large incision). The surgeon removed a well-well-differentiated neuroendocrine tumor with a 1.2 cm greatest dimension. Tumor was also present in 1 of 6 lymph nodes. He removed 19 cm & 5 cm segments of bowel in a resection of distal jejunum.
Staging: pT2, pN1, pMx. I came home on July 10. For 6-8 days at home I had night sweats and then they stopped. I have had no other symptoms since then, no diarrhea, weight loss, eating or sleeping problems and no pain. I feel fine other than some arthritic back pain that isn’t new. Twenty-five years ago I had prostate cancer and a radical prostatectomy. I have been cancer free since then and remember as a PCa support group president advising newly diagnosed PCa men to strongly consider second opinions concerning treatment options. Fortunately I took my own advice or I might currently be undergoing unnecessary Octreotide treatments. I appreciate the NET Group postings as I have read them since my diagnosis and learned a great deal about NET. It's a very important service about this uncommon cancer.

Hi @breck
Thank you for your response. Sorry this is so scary and you have breathing issues. Also sorry to hear your original care team did some damage.

My tumors are very very slow growing. They were first found on a CT scan 16 years ago and based on symptoms have likely been there at least 30 years. I take octreotide injections that have really helped the chronic coughing and shortness of breath. My case is being managed well by a NETs team at a university hospital near me. I’m glad you’re at Mayo now with a team familiar with lung NETs. My team tells me we’ll be partners for a very long time. An experienced NETs team makes a difference. Prayers for you. ❤️

@colleenyoung . FOR THREADS THAT ARE POSTED UNDER THE WRONG SUBTOPIC, CAN YOU TRANSFER THE COMMENTS THAT BELONG ELSEWHERE? THANKS SO MUCH!

Hello All .My name is Ladonna I live in Az now so went to seed Doctor with strange symptoms last December .H said was hernia CT scan tumor on pancreas thumb size so had biopsy at was for NETS. Next stop surgery in aug 2024 did with robot asst. small size for opening shorter recovery .Surgery took half of pancreas and spleen to close to tumor . I done ok for a few months now same symptoms are coming back in touch with Doctor office staff not understand what going on. Sad so may look for new place to get care .Costs are high every where .I do feel blessed I am 73 years old

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