Neuroendocrine Tumors (NETs) Support Group

I have stage IV cancer of ampulla of Vater, mets to liver. It is rare because it is small cell. Have had my regimen of...

Hi all I was wondering how can i get a second opinion for my 13 years old daughter that was diagnosed with neuroendocrine tumor with...

Good Evening. I’ve been posting from time to time about my experience with diagnosing a liver lesion found in my right lobe. I’ve had all...

Looking to speak with others who have had a successful Whipple procedure, but cancer metastasized to your liver

I would like to hear from anyone who has embolization of their liver for the purpose of stopping/slowing growth of a metastatic tumor there.

I’m questioning if I should continue PRRT for NETs on my liver. I feel much worse after starting PRRT

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....

What do I need to know about NETS? I would like to know about this cancer. it started in small intestine and has gone to...

I was diagnosed with a neuroendocrine tumour on my small bowel in 2014. This was found as I went into crisis. In June 2014 my...

2016 my husband lost his colon and part of his small intestine following an colonoscopy. He now has an ileostomy which makes treating the cancer...

My wife was found to have a tumor in the left adrenal gland and it has complicated her liver and is swelling, what do you...

has anyone used mayo clinic in Rochester Minnesota for carcinoid tumors. the diagnosis was carcinoid tumors in the liver. I am looking for the best...

Recently I had a positive 5-HIAA urine test and a 64 CU Dotatate PET scan that lit up parts of duodenum and found a 4mm...

I am looking for anyone that has dealt with this diagnosis and received treatment. My husband was diagnosed July 2018 and we’ve had two reoccurrence...

Hello I was diagonised with Neuron drone Tumor Cancer April 2024 from having a bowl obstruction surgery which was the tumor in the intestines that...

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

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...

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 All, I'm new to the NET world and feeling very lost (uninformed). Mine was found in my appendix in the pathology report by chance...

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...