Neuroendocrine Tumors (NETs) Support Group

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....

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....

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

There seems to be a general distrust of all doctors. That is sad. No matter how much homework I do, no matter how much I...

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...

Good morning, I am an 81 yr old female & was diagnosed with stage 4 NETS in my liver metastasized from my lung in Dec...

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...

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....

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

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...

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...

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...

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...

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 had two 2 cm grade 2 (well-diff) NETs removed with a distal pancreatectomy and splenectomy. So, stage 3 pancreatic cancer. Before surgery, they thought...

Biopsy results for suspicious Merkel Cell carcinoma on nose expected next week. I’m 75, live alone and wondered if it’s best to invest in temporary...