Welcome to the NETs Group! Come say hi.

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. 🙂