Hi @pammy229
I’m glad you decided to go to Mayo and will undoubtedly be hooked up with a NETs team of doctors. That’s important.

Interesting about punching a hole and your lung lobe inflating. Surprised you didn’t have shortness of breath.

The fact that you’ve had the tumor since 2015 or before should reassure you that it’s slow growing. Good news! Since you weren’t short of breath with that lobe collapsed, that should be reassuring that you’ll likely be fine if they decide to remove that lobe along with the tumor which is common for those who have a single tumor.

I have over 50 NETs tumors across both lungs because I also have DIPNECH that causes that. Those who have a single tumor can probably offer their more relatable case histories similar to yours. I have too many to remove so I had the largest tumor 2.6 cm destroyed with microwave ablation and I’ve been receiving monthly octreotide injections for 4 years to control symptoms and slow growth even more. So far so good. My 50 were first seen but not diagnosed in 2005. Based on symptoms, I’ve had them at least 35 years so that should bring you some comfort.

Let me know if you have any specific questions. Good luck on the 2nd!