Neuroendocrine Tumors (NETs) Support Group

I am currently preparing to begin Lutathera at Mayo in Jacksonville after showing progression while on Clinical trial CAM2029 octreotide. Fully terrorized as what to...

I have metastatic neuroendocrine tumors in the liver with no known origin diagnosed in Sept 2024 grade 2 KI-67 6-8% well differentiated non functioning. Been...

I’m not sure if I’m in the right place or not but I started this conversation here bc my Levels were so high. Has anyone...

I have read *** that a carcinoid crisis could be triggered during a dental procedure using anesthetics. I have upcoming dental work required. (I am...

In reference to my wife: Recent C/T of abdomen and pelvis showed "increased hypervascularity in the haptic metastasis in the caudate". Initial discovery Background: NET...

I have stomach nets, sibo (small intestinal bacterial overgrowth), Autoimmune Atrophic gastritis and Stomach nets. I’m currently on the wait and watch protocol for the...

I have grade 2, stage IV neuroendocrine tumor in the liver, KI-67 6-8%. 4x3.1 cm mass plus additional small tumors. Differentiated and non-functioning. No origin...

PRRT Update: Today I got the absolute best news😁 Had my PRRT follow-up appt with the Radiologists. After reviewing both of my surgery path reports...

Hi, I was dx with pancreatic nets in 2010, had a resection in my pancreas. There were some nodules left. I had octreotide for carcinoid...

I am grade 2 metastatic to the liver of unknown origin. diagnosed in Oct 2024. Dr suspects it originated in the GI Track. Octreotide has...

Can you tell me how you were diagnosed? I have had several G68 pet scans, (nothing lighting up intensely), multiple endoscopy and they cannot find...

Interested in others experience to understand imaging. Radiologist reports "Hepatic metastases have mildly increased in size from prior CT Dec 2024 and MRI November 2024."...

I was diagnosed with a small bowel obstruction (SBO) in 2022 that turned out to be Stage 2 NETS. Had surgery & did fine until...

I have been getting dizzy spells since I started OctreotideThursday the 14th was the worst it even made me vomitAnyone else have this and what...

Good morning. My prayers and blessings to all on this page of interest. This is a new journey for me. Underwent a lung biopsy due...

Just watched an hour long Q&A session on NETs with Dr. Eric Liu who is dedicated to NETs at his clinic in Denver. The questions...

Sorry I missed the group last night I so wanted to make it home from the dentist to discuss my situation I have a functioning...

My husband has small bowel Neuroendocrine cancer that had metastasized to liver, lymph nodes,and bones he had surgery to remove primary tumor in small bowel,...

Hi, I live in part of the U.k. and had an op to remove an atypical carcinoid tumour from my inferior lobe at the end...

My husband was diagnosed with carcinoid on 1/18/17. He had surgery on 2/3/17 to remove 18" of his ileum small intestine (36 small tumors were...