Neuroendocrine Tumors (NETs) Support Group

Was diagnosed with NET last year, have been getting Lanreotide injections every 28 days plus Everolimus medication everyday Dr stopped Everolimus in September because i...

Hi,I live in Canada and I wonder up to how much it can cost for a possible surgery.I have a mixed adenoneuroendocrine carcinomas (MiNEN), with...

After 8 months on lanreotide I am getting the diet down and no longer losing weight, but my hair loss is beginning to be noticeable....

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

Hi. I am diagnosed with NET Ki 80% potentially pancreas head and metastas liver. Looking for similar patients and willing to pay specialized doctors in...

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...

Just an update….I am 72 years old with stage 4 grade 2 neuroendocrine cancer (functional but no symptoms ). Primary in my small intestine with...

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."...

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...

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...

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...

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...

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...

Small bowel Nets with Mets, Grade 2, stage 4. I just had my 6 month follow up scan & the news is great! I have...

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...

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...