Neuroendocrine Tumors (NETs) Support Group

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Hello @pattirushing I'm glad to hear that you have completed the initial treatment for the lung...

https://connect.mayoclinic.org/comment/847375/

Discussion: Anyone had surgery to remove typical carcinoids of the lung?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 22, 2023

Comment

Thank you @hopeful33250, it is much appreciated. She has had a CT scan and a Tektrotyd...

https://connect.mayoclinic.org/comment/749330/

Discussion: Support for Young Adult with carcinoid tumor on ovary

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 14, 2022

Comment

Yes; fatty liver showed up on scans/labs following cytoreductive/debulking surgery for GI mets & now on...

https://connect.mayoclinic.org/comment/1377451/

Discussion: Neuroendocrine Tumor

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 23, 2025

Comment

I have had four rounds of Lutathera. I continue to be on an injection of Lanreotide...

https://connect.mayoclinic.org/comment/806746/

Discussion: Recurrence with Metastasis

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 5, 2023

Comment

@sophiarose I’m sorry you’re having such a rough time with treatment. I have been taking the...

https://connect.mayoclinic.org/comment/1128152/

Discussion: Short acting Ocreotide

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 21, 2024

Comment

@ggiinnaa You'll enjoy life a lot more without the chronic cough. Ask about octreotide injections. Life...

https://connect.mayoclinic.org/comment/1264531/

Discussion: Carcinoid Tumorlets Neuroendocrine tumor/Cell Hyperplasia - DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 22, 2025

Comment

My brother had PRRT after having surgery and Octreotide injections every 28 days. The tumor growth...

https://connect.mayoclinic.org/comment/877313/

Discussion: Treatments for Carcinoids

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 12, 2023

Comment

Yes, however I take Octreotide instead of the LAN. I’ve done a food journal and found...

https://connect.mayoclinic.org/comment/1445324/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 23, 2025

Comment

@pipo It's a long list. Distal Pancreatectomy Y90 to both lobes of liver Octreotide/Lanreotide Cyberknife to...

https://connect.mayoclinic.org/comment/1407713/

Discussion: Has anyone had NET show up on CT scan, I had CT scan in 23

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 3, 2025

Comment

@nvent5 Hi. For DIPNECH and typical carcinoids, I'm being treated at UCLA by the multi-disciplinary NETs...

https://connect.mayoclinic.org/comment/1526189/

Discussion: What is the surveillance protocol for typical pulmonary NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 13 3:45pm

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