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Carcinoid cancer: Want to meet others
Neuroendocrine Tumors (NETs) | Last Active: Aug 23, 2025 | Replies (169)Comment receiving replies
Was diagnosed with stage IV with primary in Duednum and 4 tumors in liver. Been on Octreotide for entire time. October scans show tumor in liver growing to 4cm from scan 6 months prior. Had liver embolization in December with follow up scan in March showing tumor shrinking. June Pet scan showed growth and other tumor growth including primary and now on femur and pancreas. Start 1st round of PRRT treatment in 2 weeks.
Replies to "Was diagnosed with stage IV with primary in Duednum and 4 tumors in liver. Been on..."
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Hello @tjstaufr and welcome to the NETs support group on Mayo Connect. In another post, I read that you have been on this NETs journey for about 12 years, which began with the finding of a gastric tumor.
As you mentioned that you are now experiencing tumor growth on the femur and pancreas, you might find the following Connect discussions helpful,
--NET tumor of the pancreas
https://connect.mayoclinic.org/discussion/net-tumor-of-pancreas-1-cm-diagnosed/
--Gastric NET
https://connect.mayoclinic.org/discussion/37-years-old-and-gastric-net/
--NET in the spine
https://connect.mayoclinic.org/discussion/net-in-the-spine/
Have you had any resections of the duodenum for the NETs? My NET journey also started in the duodenum bulb. I have had three resections since 2003. Regarding your pancreatic NET, do you have any problems with your blood sugar?