Neuroendocrine Tumors (NETs) Support Group

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Comments (932)

I'm glad that you are learning from everyone here! Oten your treatment depends on the oncologist...

https://connect.mayoclinic.org/comment/952162/

Discussion: Is everyone with pNETs on creon?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 22, 2023

I decided to get my primary care from a center of excellence for neuroendocrine cancer so...

https://connect.mayoclinic.org/comment/1466476/

Discussion: Anyone had a significant difference between a CT and MRI reading?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 23, 2025

thank you ; i am opting for radiation. Chemo pill must stay out of the sun,...

https://connect.mayoclinic.org/comment/1452988/

Discussion: What is the best treatment for carcinoid tumor in mesentery?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 4, 2025

My husband was diagnosed with GI tract stage 4 Neuroendocrine carcinoid tumor March,2022. He had surgery...

https://connect.mayoclinic.org/comment/1048670/

Discussion: Questions Regarding Results after PRRT Treatment

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 10, 2024

I have a primary pancreatic net with metastasis to the liver functioning gastrinomas. I was first...

https://connect.mayoclinic.org/comment/1035496/

Discussion: Anyone have experience with "functioning" Pancreatic NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 17, 2024

Hi Colleen. I was have Nets in my cecum, small intestines, lymph nodes, liver and heart....

https://connect.mayoclinic.org/comment/971488/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 28, 2023

I’m not sure why things are offered in a different order Some things I read say...

https://connect.mayoclinic.org/comment/956820/

Discussion: Is everyone with pNETs on creon?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 31, 2023

I’ve been receiving Lanreotide and now Octreotide injections for several years. Levels of pain and potential...

https://connect.mayoclinic.org/comment/881564/

Discussion: Advice for making monthly injections more tolerable

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 19, 2023

Just found this. I can’t remember if I posted anything about this or not, bad memory....

https://connect.mayoclinic.org/comment/1307611/

Discussion: Anyone have swelling with liver metastases?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 19, 2025

Hi, I have had a resection in my small bowel 12/24. It took about a year...

https://connect.mayoclinic.org/comment/1271695/

Discussion: Small Intestine Resection

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 1, 2025

Diagnosed in January 2021, unknown primary with mets to liver. Did lanreotide injections for about 4...

https://connect.mayoclinic.org/comment/1334821/

Discussion: Everolimus/ Afinitor experience/side effects

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 25, 2025

Hello, My dad was recently diagnosed with a GI NET. We live in the US ....

https://connect.mayoclinic.org/comment/1010196/

Discussion: GI NET attached to pancreas supposedly non-producing

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 5, 2024

Hi Teresa. Thanks for the nice welcome! As a result of elevated Alk P in my...

https://connect.mayoclinic.org/comment/907216/

Discussion: Looking for information on CAPTEM treatment

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 3, 2023

Well, love getting some good news! Mayo review of my local CT compared to Mayo scans...

https://connect.mayoclinic.org/comment/1018938/

Discussion: Statistics on progression free survival while on SSA / Lanreotide

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 19, 2024

Carcinoid cancer is so difficult to diagnose. I’m so sorry that you and your husband are...

https://connect.mayoclinic.org/comment/822402/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 7, 2023

Hello, @andre1221 and @amandafl, I am pleased to join Colleen, @colleenyoung, in welcoming you to Mayo...

https://connect.mayoclinic.org/comment/134549/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 24, 2019

I took lanreotide injections for a year and the side effects for me were worse than...

https://connect.mayoclinic.org/comment/933243/

Discussion: Anyone still have pancreas pain while taking Lanteotide?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 20, 2023

Having your surgery done by a surgeon who is not familiar with NETS does not mean...

https://connect.mayoclinic.org/comment/923027/

Discussion: Laparoscopic Possible Open Surgery Resection - Small Bowel NETS

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 2, 2023

Thank you @pavlina60. I started my first lanreotide infusion in October. I had 1 set of...

https://connect.mayoclinic.org/comment/866486/

Discussion: Diagnosed with Stage 4 pancreatic neuroendocrine metastasized to liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 25, 2023

Kim has had a rocky first week after surgery on March 1st. Went home from hospital...

https://connect.mayoclinic.org/comment/824732/

Discussion: PNET Surgery: My recovery journey

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 11, 2023