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Neuroendocrine Tumors (NETs) Support Group

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Discussions (70)
Liver and Pancreas Stable
Blessings all. I am so encouraged by the many posts and wonderful input as my wife and I are now taking a new turn with...
Last active: Jun 30, 2025
Hello. I am new here. My husband was recently diagnosed with NETs.
Hello, I am new to the discussion. My husband was recently diagonosed with nets starting from the pancreas. We are still processing this. Are there...
Last active: Jan 11, 2025
NET's Metastasis to Brain
1. Net's found in 2017 - pancreas / small intestine co- primaries 2. Lanreotide until 2023 when progression was identified including bone metastasis. 3. 4...
Last active: Nov 17, 2025
Everolimus for NETs: How long does til the body to get used to it?
Am taking Everolimus for NET which has recently entered pancreas.,any advice as to how long body gets used to it?
Last active: Apr 13, 2025
Neuroendocrine tumor pancreatic tail
My husband just recently had surgery to remove an neuroendocrine tumor that was in the tail of the pancreas. He had a Distal pancreatectomy (pancreatic...
Last active: Aug 15, 2025
Recurrence with Metastasis
Hi, I was dx with pancreatic nets in 2010, had a resection in my pancreas. There were some nodules left. I had octreotide for carcinoid...
Last active: Feb 5, 2023
New diagnosis of NET: What should I know and do to plan?
Good morning. My name is Michelle. I was just diagnosed with a 2 cm NET in the tail of my pancreas. I am 54 and...
Last active: May 4, 2023
Results from MRI confusing: Is it NETs or not?
Because of diarrhea issues an endoscopy was preformed and the doctor found something suspicious in the small intestine. Biopsy results said it was indeed a...
Last active: Jul 15, 2023
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
Cryoablation & Cementoplasty Treatment for NET Bone Metastases
My wife has been battling NET bone involvement since 2018 (co- primary sites pancreas and SB found in 2014).Treatments including PRRT (4X) sessions while stabilizing...
Last active: Dec 16, 2025
Lost with no confirmation of NETs origin: Innumerable liver lesions
Hi, my dad-active 63 year old kept complaining of boating and dull stomach pain. I am a nurse but am not very familiar with oncology...
Last active: Mar 31, 2023
Did anyone else have a long struggle to getting a NETs diagnosis?
After being tested for one year at my local hospital gastro department, I was finally sent to the UK MARKEY Cancer Center in Lexington Ky...
Last active: Jan 18 1:36pm
NET related side effect constipation
My partner has recently been diagnosed with stage 4, grade 2 pancreatic origin NET. She started lanreotide & is experiencing diarrhea but then painful problematic...
Last active: May 15 1:42pm
Good news on 6-month follow-up for Small bowel NET with mets
Small bowel Nets with Mets, Grade 2, stage 4. I just had my 6 month follow up scan & the news is great! I have...
Last active: Feb 11 11:04am
Straight to the liver: Anyone have NETs originating in strange areas?
I was diagnosed with NETs in 2021. My case was deemed unusual since it's only on the liver. According to my oncologist and from what...
Last active: May 3 7:04am
Should I see a NET specialist?
In January 2020 I had a distal pancreaectomy to remove a malignant non functioning pancreatic tumor. It was well defined; local lymph nodes clear; ki...
Last active: Dec 23, 2023
NET on liver: Question about treatments when no symptoms
Looks like this is the place to ask if anyone has been thru this.My mother was diognosed in March with a 5cm low grade NET...
Last active: Oct 31, 2024
Lanreotide side effects: diarrhea constipation, what to do?
My partner was diagnosed w a stage 4 grade 2 pancreas origin NET. She has started lanreotide & is having diarrhea and then very bad...
Last active: Jun 14, 2025
Low fever & diarrhea after distal pancreatectomy & splenectomy
Post op splenectomy and distal pancreatic for NET removalPost op 7 days and consistently running a low grade fever and diarrhea. Anyone have the same...
Support Group: Pancreatic Cancer
Last active: Nov 28, 2023
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