Hello @blm1024 and welcome to the NETs group on Mayo Connect. We have several discussion groups on Connect where members have posted about Lung NETs, here is link to many of those discussions:
https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/?search=Lung+NETs#discussion-listview
Here you will meet members like @californiazebra @pb50 and many others. As you read the posts in the link above, please feel free to post comments or questions.

Have any other treatments been suggested other than the surgery and follow up? Do you know the type and stage of your lung NETs?

Hi @blm1024
Welcome! Glad you’re in the other side of surgery.

I have typical lung carcinoids and DIPNECH. Very slow growing. Discovered in 2008. Too many to remove. Had largest 2.6 cm destroyed with ablation. CT scan surveillance all along. Still stage 1. Octreotide injections to control respiratory symptoms.

I talked to a lady from another NETs site who had a typical lung NETs tumor the size of a tennis ball removed along with one lobe at 70 years old. I last talked to her when she was 80. She just had CT scans for 10 years. No recurrence or metastasis. No breathing issues. Doing great.

Lung NETs is much less likely to spread than GI NETs. I hope you find this encouraging and you’re one and done. 😄

My NET was primary in lung (Jan 2023) 3 cm and metastasized to liver stage 1, 5 cm Ki67-2%. Very little attention has been paid to the lung as it has not shown much growth. The first 8 mos I had lanreotide injection every 28 days. CT scans showed the lanreotide did not slow the growth, so I was switched to oral chemo of Temozolomide 5 days a month. After 3 months my NET specialist discontinued it due to not showing to be effective. After that I had a bland embolization that did not work, then a mapping to determine if my tumor was receptive to radiation. On Jan 31, 2025 a Y 90 was performed. Today an MR I was done to determine the effectiveness, so stay tuned! My NET specialist told me that I would likely not die from this, but with it as it was a slow growing cancer.