Neuroendocrine Tumors (NETs) Support Group

I have written on this form before. I am 71 and was diagnosed with very slow growing neuroendocrine tumors on my lungs 8 years ago....

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 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...

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...

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 was recently diagnosed with NET that has traveled to my liver. I can't get in for a petscan until mid February. I am in...

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...

I was diagnosed with NETs in cecum, right mesentery, lymph nodes and liver in April, 2023. Today I found out that it has metastasized to...

Have 5 nets in liver, lymph node, and kidney. Diagnosed almost 2 years ago. From at least then--and maybe before--potassium has been either too low...

In Dec of 2019 I had grade 2 NET with Ki-67 of 7% tumors removed from my liverAccording to my surgeon they are behaving like...

My husband was dx with metastasized NETs originating in the small intestine 3 years ago. He's been on Sandostatin shot monthly since dx. Up until...

Hello. My sister was recently diagnosed with a pancreatic neuroendocrine tumor that has metastasized to her liver. She went into the ER presenting with signs...

Nothing like going to the Mayo for a routine prostate MRI only to be told you have 2 carcinoid multi focal tumors each plus about...

Hello everyone, My name is larry from Dallas, Texas. 09/2020 I found a mass in my left neck and Biopsy showed NET stage 4. My...

Diagnosed with NETs in liver end of 2022. Had TACE procedure to largest tumor last May. MRIs every three months. Primary cancer site undiscovered. Have...

I have two tumors in body of pancreas 1.4 cm and a 6 mm. One was biopsies and apparently it’s a NET. Was told to...

I have had CLL since 1996 and during the years had oral chemo 3 times to regulate white blood count, but for about 8 years...

I was told yesterday that my NET has spread to my spine L1 and my periportal lymph node I did Lanreotide and Ocreotide injections for...