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Neuroendocrine Tumors (NETs) Support Group

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Discussions (212)
Spreading NET
Just a up date on my journey of net been on my shots octretide for two yrs. had four treatment of prrt, not going very...
Last active: Aug 6, 2025
Stopping Octreotide???
My liver enzymes are very elevated Not sure if it is from my Bland Embolization I had done in January Or from my 9 rounds...
Last active: Nov 11, 2024
Siewert type 2 Gastroesophageal adenocarcinoma
I was first diagnosed on July 11, 2024 with Siewert type 2 Gastroesophageal Adenocarcinoma. I had a pet scan in Sept of the same year...
Support Group: Esophageal Cancer
Last active: Dec 20, 2025
How to get a second opinion for an international patient??
Hi all I was wondering how can i get a second opinion for my 13 years old daughter that was diagnosed with neuroendocrine tumor with...
Last active: May 10, 2021
Clay colored bowels & diarrhea side effects with Octreotide
Anyone have the above side effects? I was reading that the shot could effect your liver enzymes? I have non-functioning (no symptoms) metastatic tumors in...
Last active: Jan 27, 2025
Stable metastatic NET – should I be pushing harder for PRRT?
Hi everyone, I’m hoping to get some perspectives from others who have faced similar decisions around PRRT. I’m a 40-year-old male with a well-differentiated Grade...
Last active: Feb 7 5:22pm
Surgery on Small Intestine
Hello, I am 51 years old and was diagnosed in April. My primary tumor is in the intestine and the doctors want to do surgery...
Last active: Aug 15, 2025
What causes differences in reading of CAT Scan and MRI imaging?
I had a Cat Scan 9/5 that first identified the cancer. Then I had an MRI 11/19/24 and then a Cat Scan 12/3/2024.I am wondering...
Last active: Dec 7, 2024
Anyone have pancreatic neuroendocrine tumors with carcinoid syndrome?
I'm 87 years old and was recently diagnosed with a well-differentiated grade 1 pancreatic neuro-endocrine tumor, with widespread hypermetabolic disease. My PET scan showed extensive...
Last active: 2 days ago
Anyone had a significant difference between a CT and MRI reading?
My precious wife of 39 years has grade 3 NET in her liver and pancreas (also in the ileum that was removed). She is receiving...
Last active: Dec 26, 2025
Anyone taking Cabometyx?
I was on everolimus in 2024 liver NETs did not shrink. Stopped in June 2025. Had Y 90 June 2025 treating right posterior lobe with...
Last active: Mar 11 12:31pm
Anyone have experience with cabozantinib (Cabometyx)?
I am interested in hearing people’s experiences with cabozantinib. I was diagnosed January 2020, grade 3, well-differentiated, unknown primary with tumors in liver, pancreas, lungs,...
Last active: Mar 10 12:52pm
PRRT for NETs: Questioning whether I should continue or not
I’m questioning if I should continue PRRT for NETs on my liver. I feel much worse after starting PRRT
Last active: Oct 22, 2023
Questions for surgeon-considerations choosing PRRT or surgery
I am considering surgery for neuroendocrine tumors metastatic to the liver. I have about 6-7 tumors that are visible on MRI. One surgeon told me...
Last active: Sep 1, 2025
Y90 AND Captem Combo
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...
Last active: Mar 24 12:47pm
Small Intestine Resection
Hello Everyone I hope ALL is well today. It’s been a long time since I’ve been on here. I’ve been through a lot health wise...
Last active: Apr 23, 2025
What do I need to know about NETS?
What do I need to know about NETS? I would like to know about this cancer. it started in small intestine and has gone to...
Last active: Sep 11, 2023
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
PNETs: What comes first? Surgery or try to shrink tumor with chemo?
Pancreatic nets on the tail moved to liver. It might be nonfuntional as it was found by accident and was shocking is an understatement.Do the...
Last active: Jan 25, 2025
New and concerned about my wife.
Hello all. I am new here and somewhat awkward as I was once a cancer patient and now my precious wife of 38 blessed years...
Last active: Mar 20, 2025