Neuroendocrine Tumors (NETs) Support Group

My wife has well differentiated, grade 2 stage 4 NET to the terminal illeum (which was removed) w mets to the liver and pancreas -...

I have had non-alcoholic cirrhosis of the liver for 7 years. I’m doing really good but after a lung biopsy last week, I have also...

Hi! I had pancreatic NET surgery on Feb.1. Recovering nicely at home. Never had flushing before surgery. Now I experience flushing almost every day. Should...

Hello. I’m thinking this may have been discussed before. Sorry if I’m asking an old question Is everyone with a pNET on Creon. Pancreatic enzymes...

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."...

Diagnosed with high grade(3) neuroendocrine carcinoma. Irgun duodenum. Mets pancreas and many in liver. Did 4 cycles of carboplatin and etopiside chemo in hope to...

20 months after NET found in small intestine and already spread to liver. I have had resection, monthly octreotide injections, and Lutathera. The cancer seemed...

4 yrs ago routine prostate MRI showed nets in my Ilium of small intestine, surgery 2022 to remove 2 feet of small intestine and about...

PNET Grade 2 (K-67 3.2%) in tail of pancreas, both portal and splenic veins. No mets to liver or spleen. Just finished 3rd round of...

I was on everolimus in 2024 liver NETs did not shrink. Stopped in June 2025. Had Y 90 June 2025 treating right posterior lobe with...

I have recently been diagnosed with the Differentiated Adenocarcinoma with Neuroendocrine Differentiations in the Gallbladder, Liver, and parts of right and left Abdomen. I have...

I have primary NET in the small intestine, spread to stomach wall and liver. I just got my 3rd monthly Somatuline (Lanreotide) injection 4/12. About...

Hi I am new here and just want to have a good place to chat with people that share my thoughts and concerns about my...

I had stage 4 neuroendocrine cancer 3 years ago. They removed 55 % of my liver to remove 3 tumors and 17 inches of my...

I am interested in hearing people’s experiences with cabozantinib. I was diagnosed January 2020, grade 3, well-differentiated, unknown primary with tumors in liver, pancreas, lungs,...

Hello. My wife (53) was diagnosed with stage IV neuroendocrine rectal cancer last November. It had spread to her liver. She did 6 treatments with...

As I promised I would after 3 months of lanreotide injections I’m reporting the results of my oncologist’s CT scan with contrast to determine whether...

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...

A 1.7 cm Pnet was found on tail of pancreas about 4 months ago as an incidental finding. Lots of scans and a Dototate 68...