Hi @aclanton @terradean
My largest 2.6 cm tumor was destroyed with microwave ablation. Not a fun 2 hour procedure, but I'd rather have that than open surgery. I did have a partially collapsed lung afterwards, but that healed up. That was 3 years ago and they still believe the tumor was successfully destroyed. It seems the standard is to remove the lung lobe that contains the tumor and the few people I've read about here and one I talked to from another site all seemed to do well and not have any lasting breathing effects. Yes, I find that surprising too.

The reason they didn't remove a lobe with me is because I have over 50 tumors scattered throughout both lungs so they can't remove all the lobes. I have obstructed airways. The tumors are all growing very slowly, mostly a little under and over 1 cm. I was told if any others take off from the pack or reach 2 cm, I will likely have microwave ablation again to destroy them. He expects that will happen. At that size, they are more likely to spread outside the lungs. After all these years, my lung NETs is still considered stage 1 although my DIPNECH is considered advanced. The tumors were first spotted on a CT scan in 2008, but based on respiratory symptoms, I've had them for 30+ years so when you consider that, it's pretty amazing that I'm doing so well. The Ki-67 is only 2% (percentage of cells dividing). That's really low! My breast cancer is Ki-67 50% which is really high. The octreotide injections for the past three years have managed the respiratory symptoms with a huge improvement in quality of life. Before octreotide, it was like having bronchitis for 30 years straight. It annoyed me and everyone else. If you have multiple nodules/tumors then DIPNECH is also a diagnosis to consider. That's very rare, but also underdiagnosed. I have both DIPNECH and lung NETs (typical carcinoids).

I do know a lady who had one typical carcinoid, about 9 cm I believe, and had the lobe removed. She was about 70 at the time and ten years later she was still just having an annual CT scan to monitor with no other treatment and no impact on her breathing. Pretty amazing. I would be nervous about having a lung lobe removed too so I understand your concern, but I'm encouraged by all the success stories! As Theresa suggested, a second opinion is always a good idea. Please keep us posted.