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Discussions (68)
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...
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...
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?
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...
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...
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...
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...
How do you mentally handle reoccurrence?
Hi, I am struggling. I just had my 6 month surveillance mri for my pancreatic net. (It has been 3 years since my distal pancrectomy...
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 -...
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...
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...
Neuroendocrine Pancreatic Tumors with KIT Missense Variant Exon 10 GOF
Diagnosed in August 2025. Started Lanreotide injections in October. Pet Scan revealed a "Christmas tree". Tumors covering pancreas and liver. Non-functional and no further symptoms....
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...
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...
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...
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...
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...
Low fever & diarrhea after distal pancreatectomy & splenectomy
https://connect.mayoclinic.org/discussion/post-op-splenectomy-and-distal-pancreatic-for-net-removal/
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...
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...
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...
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