Neuroendocrine Tumors (NETs) Support Group

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...

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....

Wisconsin has its own patient directed group for those with NETs and their caregivers. Its called Wisconsin Neuroendocrine Cancer Connection. The group is on facebook....

Any one have 2 surgeries because doing it all at once would be too Much? Surgery 1: remove pancreatic tail tumor. My spleen was saved....

My wife and I visited with one of my doctors on my Mayo care team yesterday. We reviewed my recent tests. The CAPTEM chemo is...

What is my life expectancy as a result of my NET? Diagnosed 3 years ago with Grade 1, Stage 4 NETs. Primary tumor is probably...

Hello, recently diagnosed with Pancreatic NETS. Unsure of type other FNA which listed grade 1 and KI67 @ .97%. Scheduled for body and Distal surgery...

I was surprised this morning by an unexpected call from my surgical oncologist. I saw him mid-January and after another MRI (I had one in...

Hello everyone, looking for some help and information. I have recently diagnosed with duodenal neuroendocrine tumor Grade 1 as per Endoscopy biopsy report. After that...

I was diagnosed with MCC and had surgery and followed with 30 treatment of radiation on the right side of my head, cheek and neck.The...

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...

Hi, I was diagnosed with NETS last May. Since I have had open heart surgery to replace the two valves on the right side of...

I have had a full whipple in March 2019. In March 2023 I was diagnosed with neuroendocrine liver metastases (NELM), Grade 2. Since June 23...

It turns out that my husband has actually had this since at least 2014 when he had most of his pancreas removed as well as...

I had my first Lanreotide injection four days ago on Monday, but was not told of any diet restrictions. I've seen that I should eat...

I’m declining rapidly since last October 2021. My tumor markers Chromogranin A and CA 19.9 (not even mentioning D Dimers) were elevated and my GI...

Hi my name is Audra and I was diagnosed with Carcinoid Cancer in 2016. I drove myself to the ER with severe pain and had...

After eight years (yes, eight years/ ten doctors) of chasing ULQ abdominal and back pain, I recently received a diagnosis of an ill-defined, well differentiated,...

I have been referred for cytoreductive/debulking surgery (at Mayo Jacksonville) because my scans show unexpected, fairly significant progression of the disease. I meet with the...