Neuroendocrine Tumors (NETs) Support Group

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Comments (653)

Hi @pammy229 I’m glad you decided to go to Mayo and will undoubtedly be hooked up...

https://connect.mayoclinic.org/comment/1198299/

Discussion: Any advice for someone recently diagnosed with NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 27, 2024

Hi Carrie! I am do sorry to hear your news and I completely empathize with your...

https://connect.mayoclinic.org/comment/1073202/

Discussion: Neuroendocrine Carcinoma with Liver Metastasis

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 23, 2024

A quick update for the group as I don't think I have posted one in a...

https://connect.mayoclinic.org/comment/134732/

Discussion: NET - Insulinoma

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 14, 2021

@tomrennie Thank you for your input. Typical (grade 1) and atypical (grade 2) classifications are specific...

https://connect.mayoclinic.org/comment/1430349/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 3, 2025

I am 69 years old and am diagnosed with multiple liver metastasis from lung carcinoid tumor....

https://connect.mayoclinic.org/comment/825019/

Discussion: Newly diagnosed-Primary Malignant Neuroendocrine of Lung

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 12, 2023

@gmapam Your NETs oncology team should be able to tell you. You need to have somatostatin...

https://connect.mayoclinic.org/comment/912394/

Discussion: How do I know somatostatin is in my system?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 13, 2023

Hello, In May '22, after surgery to remove a tumor in my right lung and a...

https://connect.mayoclinic.org/comment/823582/

Discussion: Stage 4 Carcinoid tumor: What treatments have you had?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 9, 2023

Hi @bcraft. I'm new to this site too and what brought me here was a search...

https://connect.mayoclinic.org/comment/838450/

Discussion: New DIPNECH diagnosis, need advice on doctors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 5, 2023

Gig666, I am somewhat appalled that your docs didn't give you more options rather than just...

https://connect.mayoclinic.org/comment/1054944/

Discussion: NET not found on PET/CT

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 21, 2024

I had surgery in 2016 (8-years ago) to remove tumor / mass at appendix and five...

https://connect.mayoclinic.org/comment/1142526/

Discussion: Diet restrictions with Lanreotide?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 16, 2024

Hi, I was diagnosed 8-7-23 with NET of the small intestines. I am a Grade 2...

https://connect.mayoclinic.org/comment/1015199/

Discussion: Anyone have a neuroendocrine tumor in small intestine?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 13, 2024

When I was diagnosed that my NET had come back 2 1/2 years after my liver...

https://connect.mayoclinic.org/comment/822159/

Discussion: Stage 4 Carcinoid tumor: What treatments have you had?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 7, 2023

Hi Theresa, My dietary journey with this disease has been long and troublesome, so I will...

https://connect.mayoclinic.org/comment/673106/

Discussion: Welcome to the NETs Group! Come say hi.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 20, 2022

I just watched lunch with docs on YouTube from CCF carcinoid cancer foundation with Robert Ramirez...

https://connect.mayoclinic.org/comment/1417594/

Discussion: DO I need 2 teams if I have both Nets-lung and DIPNECH?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 17, 2025

@tgsenn70 Greetings! I went through the PRRT in early 2024. It involved 4 sessions over 8...

https://connect.mayoclinic.org/comment/1416005/

Discussion: I have a neuroendocrine tumour in the small bowel and liver lesions

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 15, 2025

Hi Teresa, Hubs is currently stable. His treatment is the Sandostatin/Octreotide. It appears that when his...

https://connect.mayoclinic.org/comment/1270087/

Discussion: New Diagnosis: husband's labs are all indicating NET

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 30, 2025

I am 48, well-diff, grade 3 (ki67 17-29), unknown primary with tumors in liver (innumerable), pancreas,...

https://connect.mayoclinic.org/comment/1117054/

Discussion: Everolimus for multiple Neuroendocrine tumors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 3, 2024

I am hoping someone on this site has a glucagonoma and their experience, please respond. 1...

https://connect.mayoclinic.org/comment/1350572/

Discussion: Son, 48 diagnosed with PNET pancreatic cancer 8cm tail & spleen

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 17, 2025

Hi, in case it's of interest, the following describes my recent NET experience. Following a blockage,...

https://connect.mayoclinic.org/comment/782928/

Discussion: Welcome to the NETs Group! Come say hi.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 9, 2022

Dbamos1945 and bubbles 2023 - Dbamos, your response struck a cord with me as your response...

https://connect.mayoclinic.org/comment/885814/

Discussion: NETs: Scheduled for small intestine resection: What to expect?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 26, 2023

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