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Neuroendocrine Tumors (NETs) Support Group

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Stage four high-grade neuroendocrine carcinoma
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...
Support Group: Lung Cancer
Last active: Dec 18, 2023
Discussion
GI Net stage 4 advanced: Is it incurable?
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...
Last active: Jul 28, 2024
Discussion
How much can it cost for (MiNEN) surgery at Mayo Clinic?
Hi,I live in Canada and I wonder up to how much it can cost for a possible surgery.I have a mixed adenoneuroendocrine carcinomas (MiNEN), with...
Support Group: Visiting Mayo Clinic
Last active: Feb 20, 2025
Discussion
Anyone have hair loss with lanreotide?
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....
Last active: Nov 4, 2024
Discussion
Metastatic NeuroEndocrine Grade 3 - ki 80% -
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...
Last active: Jan 21, 2024
Discussion
Anyone deal with severe pain after Y90 treatment?
5 days ago I had y90 embolization to the liver for metastatic nonfunctional NET. Severe pain and vomiting after procedure. Had to be admitted for...
Last active: Jan 17 11:27pm
Discussion
Neuroendocrine cell tumor
I have had non-alcoholic cirrhosis of the liver for 7 years. I’m doing really good but after a lung biopsy last week, I have also...
Last active: Mar 21, 2025
Discussion
Finished PRRT and I'm wondering about others' results.
My husband completed 4 Lutathera treatments and had his first PET/CT with intravenous contrast (Dototate). He has source NET in pancreas metastasized to liver. Diagnosis...
Last active: Jan 23 11:49am
Discussion
2nd 3 month follow up
My wife has well differentiated, grade 2 stage 4 NET to the terminal illeum (which was removed) w mets to the liver and pancreas -...
Last active: Oct 5, 2025
Discussion
Flushing after NET surgery
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...
Last active: Mar 25, 2023