Hi @josey1

Sorry about all that you are going through. I have both DIPNECH and typical lung carcinoid (neuroendocrine cancer) that was diagnosed 3 years ago, but 50+ lung tumors first detected in 2008 that were a mystery to 20 various specialists for 12 years, chronic coughing for 30 years prior, bronchiectasis and shortness of breath. I was known for my coughing. I've been taking octreotide injections for over 2 years. It probably took about 3 months or so to take full effect, but it improved my coughing, mucus and shortness of breath so much it has been life changing in a positive way. The respiratory symptoms were miserable for decades.

I also have breast cancer for the second time. I had a double mastectomy the first time, 10 years ago, stage 1, BRCA2 and CHEK2 mutations, and the cancer came back very aggressively (Ki-67 50%) in my chest wall 7 years later. I didn't have any other treatment initially. This time I had chest wall/pectoral muscle surgery to remove the tumor, was left with a positive margin and then had 37 radiation treatments on the right side of my chest about a 8" x 12" area. Radiation did not cause long term breathing issues. They told me the radiation machine is so high tech now, it's really precise about depth and wouldn't go as deep as my lungs. So be sure you have treatment using state-of-the-art equipment. I'm not a candidate for chemo due to pre-existing neuropathy so I can't comment on that. I've been taking Kisqali and Letrozole for the breast cancer for 2.5 years. The BC and DIPNECH meds do cause some of the same side effects so we're doubling down on some side effects, but as far as I know the different meds don't interfere with each other's effectiveness.

I'm really intrigued that your lumpectomy revealed both breast cancer and DIPNECH cells. Was that in the same tumor or different tumors? @mir123 also has breast NET but not DIPNECH as far as I know. She might have helpful information to add.

I read your other post under the NET discussion as well. About 25% of NETs start in the lungs, but most start in the GI tract so I understand your concern about your abdominal rash and stomach issues. I had a Cu64 DOTATATE PET scan a couple years ago and I do not have the somatastatin receptors for that scan so it was of no help for me and I won't have more. I recently saw a presentation that said about 50% of lung NETs patients don't have the receptors. I think a higher percentage of GI NETs patients do have them. Oddly enough, even people without those receptors seem to respond to octreotide as I have. So that's good news. I wouldn't be a candidate for PRRT though.

I have a UCLA team that includes a breast oncologist, a thoracic oncologist who is part of a NETs disciplinary team and an interventional radiologist who destroyed my largest lung NET with microwave ablation, 2.6 cm. I have too many lung tumors scattered all over both lungs to surgically remove. Most of the 50+ are around 1 cm+ and growing very, very slowly. He said any that reach 2 cm we will destroy with microwave ablation as those are the ones most likely to metastasize. After decades the slow growing lung NETs is still stage 1 as far as they can tell. They do consider my DIPNECH to be advanced stage. It's all complicated as you stated in one of your posts.

Please feel free to send me a private message and I'll be happy to talk to you by phone if that will be helpful. Best of luck with your decisions, Zebra