@nannybb
My breast cancer is your most common hormone driven kind. Even though stage 1, I had a double mastectomy because I have two genetic mutations for BC so had an 85% chance of getting it. I didn’t want more new BC. It recurred in my chest wall and pectoral muscle 7 years later anyway. More surgery, 37 radiation treatments and 5 years of targeted meds so far. Doing good, but the meds are challenging. BC not related to NETs. Nothing alike. Cancer runs heavily in my family and everyone gets a different kind(s) so it wasn't unexpected.

Yes, they just monitor my 50+ tumors with CT scans because I need to preserve the healthy lung tissue. That’s a heavy tumor load. They destroyed the largest 2.6 cm tumor with microwave ablation because it was large and growing faster than others. They feared it might metastasize. That was 5 years ago and successful. All tumors are still confined to my lungs after decades. I need 2 more smaller tumors ablated because they are blocking airways and my lower right lung is shut down but my NETs team disagrees on when. Next CT and discussion is 3 months away.

I’ve been taking octreotide injections for 5 years now and they have been life changing and stopped the 30+ years of coughing all day long. Those around me are thankful too. Octreotide makes me diabetic but worth the trade off. Octreotide has also made me way less sensitive to fragrances so I’m free to go most places now. My coughing was disruptive in movies, at work, pretty much everywhere. I can even pet non-hypoallergenic animals for the first time in my adult life! Yay!!!

Some DIPNECH cases have required lung transplants but that is not the norm. All the other cases I’ve read about had under 15 tumors though. I had a 73 year old pulmonologist tell me he’d never seen so many lung tumors on anyone. He was excited like he had found Bigfoot! Lol