I am 75 and have carcinoid tumors NET in lungs

@azrosegold
That's a significant size. My largest was 2.6 cm and they destroyed it with microwave ablation to be sure it wouldn't metastasize. I was told our guideline will be to destroy any that reach 2 cm or start to behave differently from the rest of the pack such as growing much faster. Those that are just growing slowly over the years will just be monitored and are best left alone. Just know I've had DIPNECH/NETs for decades and it has never spread outside my lungs so that's really good news. Glad you had the large one removed.

Oh, I have also learned that specialists often ignore incidental findings when they are not related to the issue they are treating. That's a disservice to patients and they should have you discuss incidental findings with your primary doctor at the very least. This is exactly why I always read the scan reports myself so I can ask questions and do my own research.

@californiazebra I see my pulmo next week to go over my latest CT. Not sure if Mayo has a definitive protocol or if it’s a case by case basis for when to intervene when they see tumor growth. I’m also not sure if they do ablation. I will ask him. Are you seen at a large teaching hospital? Honestly I’m just now getting over the shock and recovering from my surgery and ready to become proactive! I’m trying not to micromanage my condition and trust in my providers while still being an informed patient. It’s kinda a fine line for me.

@azrosegold
Yes, I’m being seen at a university hospital. Most university hospitals and major cancer centers have neuroendocrine programs. Don’t feel like you need to get rid of every nodule. For DIPNECH you’ll mostly just monitor because you need to preserve healthy lung tissue and any removal or ablation takes some healthy tissue with it. It’s mostly about managing symptoms if you have any. Did they say you have typical carcinoids? They are slow growing and mostly stay confined.