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Public Support Group 2,507 total results
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Sorry primary is the small intestine and secondary the liver.
https://connect.mayoclinic.org/comment/1352923/
Comment
@tgsenn70 I would share the swelling with your care team especially the abdomen. When I first...
Discussion
What does the future look like for a stage 4 NET patient?
This is my story....A lobectomy of upper right lobe of the lung in 2016 It returned in 2023 with a tumor in a lymph node...
Discussion
Tumor growth in three month follow up MRI
Interested in others experience to understand imaging. Radiologist reports "Hepatic metastases have mildly increased in size from prior CT Dec 2024 and MRI November 2024."...
Discussion
NET and neuropathy
20 months after NET found in small intestine and already spread to liver. I have had resection, monthly octreotide injections, and Lutathera. The cancer seemed...
Discussion
Immunotherapy (Ipilimumab & Nivolumab) for NETs: Any experiences?
Diagnosed with high grade(3) neuroendocrine carcinoma. Irgun duodenum. Mets pancreas and many in liver. Did 4 cycles of carboplatin and etopiside chemo in hope to...
Discussion
Lanreotide side effects: Anyone having GI issues?
4 yrs ago routine prostate MRI showed nets in my Ilium of small intestine, surgery 2022 to remove 2 feet of small intestine and about...
Discussion
PNET in Tail of Pancreas, Portal and Splenic Veins
PNET Grade 2 (K-67 3.2%) in tail of pancreas, both portal and splenic veins. No mets to liver or spleen. Just finished 3rd round of...
Discussion
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...
Discussion
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....
Discussion
Adenocarcinoma with Neuroendocrine
I have recently been diagnosed with the Differentiated Adenocarcinoma with Neuroendocrine Differentiations in the Gallbladder, Liver, and parts of right and left Abdomen. I have...
Discussion
Anyone else get bloating and abdominal pain from NETS or Lanreotide?
I have primary NET in the small intestine, spread to stomach wall and liver. I just got my 3rd monthly Somatuline (Lanreotide) injection 4/12. About...
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