Neuroendocrine Tumors (NETs) Support Group

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...

Hi I am new here and just want to have a good place to chat with people that share my thoughts and concerns about my...

I have recently been diagnosed with a "biochemically active extra-adrenal catecholamine-secreting PARAGANGLIOMA in the right retrocaval/perihepatic region (behind liver) adjacent to the IVC. " Along...

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...

Pnets KI67 25%. My husband had 3 captems cycles. The last cycle had toxicity and became sick. Anyone experience Y90 procedure for Pnets mets to...

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...

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...

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...

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...

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 everyone. I'm new to the journey. My husband was diagnosed last October with NETS. Surgery was done in January. During surgery seeding was seen...

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...

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...

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...

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...

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...