Neuroendocrine Tumors (NETs) Support Group

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...

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...

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...

Starting Everolimus later this week due to progression after 3 months of Lanreotide. Planning to stay on Lanreotide while on Everolimus. What are your experiences...

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...

My 29 son has a grade 3 PNET and Liver METS. He receives monthly Lanrotide which causes wild blood sugar highs and rapid lows. He...

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

Hi I’m lovelea. And I just joined Mayo support group. It will be nice to ask others what I can expect and learn from. My...

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....

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...

1. Net's found in 2017 - pancreas / small intestine co- primaries 2. Lanreotide until 2023 when progression was identified including bone metastasis. 3. 4...

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

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

My husband is under 40, and a recent scan showed that his cancer has progressed to his liver after having his colon removed last year...

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 sister has Grade 3 pancreatic neuroendocrine tumor with liver nodules. She was initially treated with CapTem, but it didn’t work, so the doctor switched...