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Carcinoid cancer: Want to meet others

Neuroendocrine Tumors (NETs) | Last Active: Aug 23 1:27pm | Replies (169)

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Did the same thing come back in 2024? How are you doing now?
I go for surgery in a few weeks.. adn Plan on doing the "grandma" shuffle as soon as I can and as much as I can. They are planning on removing part of my small intestine.
Thank you for any advise you are willing to share..

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Replies to "Did the same thing come back in 2024? How are you doing now? I go for..."

Yes, it came back with a vengeance, it had metastasized to peritoneal lining, liver, gallbladder, bladder, appendix, small bowel, large bowel, diaphragm muscle. NETS surgeon performed a cytoreductive/debulking surgery; huge & painful surgery that took about 3 months to recover from. Have been on Octreotide injections ever since.

I forgot to include I’m doing fine, still do all activities I did before any of this started! Feel great, but I do get tired easily; it will be a year in November. Just had a follow up PET scan & I only have one small spot in lower colon that I’ve been referred for Lutathera treatment that I hope will zap it! You can do this & best advice is to stay happy & positive😊

I’m a grandma too, just turned 66! Ask any questions you want, I’m happy to answer them all. Please keep us posted on how your surgery goes, you will do great!