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Neuroendocrine Tumors (NETs) | Last Active: 2 days ago | Replies (410)Comment receiving replies
Hello. Anyone out there diagnosed with grade one tumor of small intestine? I had section of small and large intestines removed, reconnected, and learned I was stage 2. I realize I’m extremely lucky as my NET was discovered during a routine colonoscopy when it literally popped through the colon wall.
Anyone else out there with similar diagnosis? Is your treatment “monitor” only? Have you experienced reoccurrence? Thank you.
Replies to "Hello. Anyone out there diagnosed with grade one tumor of small intestine? I had section of..."
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Hello @rushlakekathy and welcome to the NET discussion on Mayo Clinic Connect. I am glad that you found this forum, it is a great help to connect with others who are also dealing with this rare type of cancer. I'm sure you will find encouragement and support.
I have had three surgeries (over a 20-year period) for NETs in the upper digestive tract, specifically in the duodenal bulb. I have had no symptoms, and these were found during an upper endoscopy. I now have endoscopies every other year. It has been about six years since my last surgery.
My treatment involves following up with endoscopies, having blood drawn to check for serotonin levels as well as liver/pancreas functioning and MRIs of the liver and pancreas. I have cysts in the pancreas and lesions on the liver, but they have remained unchanged over several years.
Have you experienced carcinoid syndrome (symptoms are often facial flushing and/or diarrhea)? Also, what are your doctor's recommendations for follow-up?