Neuroendocrine Tumors (NETs) Support Group

Does anyone know how much CGA results can vary from lab to lab. Following are the last four CGA results for my wife: 75 (11/16...

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...

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...

I was dx with small bowel NET, met to the liver in 2018 (Carcinoid subset). Surgery removed the large primary tumor & some lymph nodes....

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...

My mom is 81 and she was just diagnosed with pancreatic cancer stage IV that has metastasized to her liver. Her oncologist has suggested that...

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...

I received the results of a lung biopsy last week & it showed DIPNECH. I see an oncologist next week to discuss treatment options. Pulmonologist...

1. Net's found in 2017 - pancreas / small intestine co- primaries 2. Lanreotide until 2023 when progression was identified including bone metastasis. 3. 4...

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...

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 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...

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...

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

My sister has Grade 3 pancreatic neuroendocrine tumor with liver nodules. She was initially treated with CapTem, but it didn’t work, so the doctor switched...

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...

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...