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Anyone have a neuroendocrine tumor in small intestine?
Are these tumors benign? I was told it is small and most was removed by endoscopy but in an area in the duodenum where surgery is risky. Does anyone have this diagnosis? I’m afraid and don’t know what to believe. It hurts at times. I’m scheduled for a PET/CT scan this Friday!
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HugInterested in more discussions like this? Go to the Neuroendocrine Tumors (NETs) Support Group.
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Welcome, @teresea. You may be interested interested in this related discussion:
- Bland embolization or transarterial chemoembolization (TACE)
https://connect.mayoclinic.org/discussion/blan-liver-embolization/
How did the bland hepatic artery embolization go?
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1 Reaction@jestjohn, checking in. Like @dbamos1945, I wanted to ask how the scan went yesterday. Thinking of you.
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2 Reactions@jestjohn: Best of luck with your scans today. You may be asked to have specific blood and 24hr urine tests… these will give you and your docs needed information to determine treatment. I would get copies of all test reports, including a DISC of today’s scans (request from tech today)!
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1 ReactionHi @jestjohn,
I have NET small intestine primary tumor near pyloric channel & duodenum that was diagnosed by endoscopic biopsy (second opinion) October2022. This determined I am Grade 1 (slower growth) but with liver involvement which reflects metastases: Stage 4. About a year ago I began Samotuline Depot 28day injections (aka:Lanreotide) as treatment to control symptoms and hopefully tumor spread, as well as enlargement. I was told that this injection will retard Seratonin from spreading tumors (and retard growth) wherever they are.
I am sharing this with you hoping info on my experience (seemingly similar diagnosis) will ease your anxiety. After 6 mo MRI showed tumor shrinkage. I will have another MRI soon.
I am available to share more or answer your questions if you desire- you can reply here or by private message. Best to you.
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3 ReactionsI have an unknown primary mine has spread to my liver spine and ribs
I have had 2 bland embolizations
I am now on Everolimus get my first bloods today
I was just wondering how the doctors are planning on treating the bone metastasis
I wish you the best of luck on your journey
Happy and Healthy Holidays
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1 ReactionYes. I had a Dotatate scan and the cancer has spread to my liver and 20 places on my bones. I had bland embolization last Friday. Will see the surgeon for removal of primary as soon as I heal.