Neuroendocrine Tumors (NETs) Support Group

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Comments (933)

My Husband was diagnosed with GI tract stage 4 Neuroendocrine carcinoid that spread to liver, lymph...

https://connect.mayoclinic.org/comment/1048688/

Discussion: Questions Regarding Results after PRRT Treatment

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 10, 2024

On Thurs. Oct. 5 my fridge had slid open (probably about 6 pm) I didn't notice...

https://connect.mayoclinic.org/comment/944661/

Discussion: Lanreotide and Refrigeration

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 9, 2023

Hello. My husband was diagnosed last year with grade 1, stage 4, small bowel NET. He...

https://connect.mayoclinic.org/comment/1415518/

Discussion: How can test be so different?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 14, 2025

I'm like Turkey. I want to stretch it out as long as I can. My surgeon...

https://connect.mayoclinic.org/comment/1374166/

Discussion: My doctors know nothing

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 19, 2025

My husband took Octreotide shots for about 18 months & some months after the shot he...

https://connect.mayoclinic.org/comment/1269503/

Discussion: Any one with Neuroendocrine tumors getting the shot once a month?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 29, 2025

Hello, My name is Dulce I was diagnosed with neuroendocrine cancer, which started in my duodenum...

https://connect.mayoclinic.org/comment/1198506/

Discussion: Anyone have experience with Acites?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 28, 2024

Margaret10: Yes, I have had neuropathy (beginning in feet, graduated up legs and also now beginning...

https://connect.mayoclinic.org/comment/1018234/

Discussion: I have 3 neuroendocrine tumors in left lung: Can I handle radiation?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 19, 2024

Thank you for sharing. my husband has P-NET. and was getting Sandostatin shots monthly, they gave...

https://connect.mayoclinic.org/comment/853060/

Discussion: Anyone else get bloating and abdominal pain from NETS or Lanreotide?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 2, 2023

Hi Samotuline Depot is actually Lanreotide, so it is probably not a substitution. Regarding serotonin in...

https://connect.mayoclinic.org/comment/1462076/

Discussion: Should NET w/liver met patient stop rx that has Seratonin?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 16, 2025

I take Lanreotide and as far as I know no side effects after almost 2 yrs...

https://connect.mayoclinic.org/comment/1196440/

Discussion: Any one with Neuroendocrine tumors getting the shot once a month?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 24, 2024

Hello. By the time he was diagnosed he had lost almost 40 lbs. He has only...

https://connect.mayoclinic.org/comment/955865/

Discussion: Is everyone with pNETs on creon?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 29, 2023

Hi Teresa, We did a PET scan within the first month of discovering the tumors. It...

https://connect.mayoclinic.org/comment/804496/

Discussion: Straight to the liver: Anyone have NETs originating in strange areas?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 31, 2023

My story is/was similar to yours (and I'm a similar age!). Picked up a small pancreatic...

https://connect.mayoclinic.org/comment/1349823/

Discussion: NET tumor of pancreas (1 cm) diagnosed

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 16, 2025

Hi gismole1 - I am happy to provide my experience. Dr. Ong at Swedish First Hill...

https://connect.mayoclinic.org/comment/1159074/

Discussion: PRRT side effects and results

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 18, 2024

Yes, I have the Lanreotide high blood pressure situation. I take Amlodipine and Losartan daily to...

https://connect.mayoclinic.org/comment/1118403/

Discussion: Anyone have problems with elevated blood pressure while on Lanreotide?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 5, 2024

I was diagnosed with a net tumour in my colon in 2021. This metastasized to the...

https://connect.mayoclinic.org/comment/1076135/

Discussion: Neuroendocrine Carcinoma with Liver Metastasis

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 28, 2024

I was diagnosed Dec. 2021 Tumors started in the small intestines and metastasized to the liver...

https://connect.mayoclinic.org/comment/1035643/

Discussion: What questions should I ask oncologist tumor types and chemo treatment

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 18, 2024

What type of embolization did you have? Did it include radiation? I have been on lanreotide...

https://connect.mayoclinic.org/comment/977539/

Discussion: After liver embolization: Looking for the best diet + food suggestions

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 9, 2023

Hi there, I'm new here. Doctors diagnosed me with a neuroendocrine tumor in the terminal ileum...

https://connect.mayoclinic.org/comment/1376327/

Discussion: Neuroendocrine Tumor

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 21, 2025

Yes I had all those test including 5-H1AA urine test. A liver biopsy determined it was...

https://connect.mayoclinic.org/comment/1261353/

Discussion: Diagnosing small bowel NETs with carcinoid syndrome

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 18, 2025

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