← Return to What tests should be part of a surveillance protocol for lung NETs?

Discussion
Comment receiving replies
Profile picture for Zebra @californiazebra

@colleenyoung
Probably better answered by someone who had their tumor(s) removed. I have lung NETs/ DIPNECH so too many tumors to remove. Mine are typical carcinoids. Ki-67 2%. I had a DOTATATE PET scan initially but don’t have somatostatin receptors so no more. Initially I had a chest CT every 3 months, now every 6 months indefinitely. I also take an octreotide injection every 28 days to manage respiratory symptoms and slow tumor growth. Very effective. I’ve had the nodules/tumors for decades and they are still confined to my lungs which is great news.

I did talk to someone who had a single 9 cm tumor and lobectomy. She had one chest CT a year for 10 years and no further issues after removal. I lost touch with her after that. Best of luck to you.

Jump to this post


Replies to "@colleenyoung Probably better answered by someone who had their tumor(s) removed. I have lung NETs/ DIPNECH..."

@californiazebra was your Dotatate negative or positive?