Neuroendocrine Tumors (NETs) Support Group

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Comments (2,337)

@lindabees Wow. Thank you for the respond. 5 years ago I had mini Whipple(PNET). A month...

https://connect.mayoclinic.org/comment/1408178/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 4, 2025

What are your thoughts on having SBRT performed on a handful of small liver lesions and...

https://connect.mayoclinic.org/comment/1313342/

Discussion: Pancreatic Cancer Q&A with Dr. Stauffer, Mayo Surgeon: Archive

Support Group: Pancreatic Cancer

Posted: May 26, 2025

Just FYI, my NETs in my liver that is the largest tumor is metastatic from my...

https://connect.mayoclinic.org/comment/939449/

Discussion: Updating about My Lanreotide Injections & CT Scan

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 30, 2023

I've been dealing with it. I had multiple tumors on my pancreas, with lesions on my...

https://connect.mayoclinic.org/comment/830996/

Discussion: Neuroendocrine Insulinoma: Is treatment different for this type?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 24, 2023

@stevestenberg31 My wife@Kim1965, in April 22 diagnosed with mass on pancreas and also too many lesions...

https://connect.mayoclinic.org/comment/830142/

Discussion: Lost with no confirmation of NETs origin: Innumerable liver lesions

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 22, 2023

My husband has a neuroendocrine tumor in the small intestine found by accident as they were...

https://connect.mayoclinic.org/comment/1272924/

Discussion: Anyone have a neuroendocrine tumor in small intestine?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 2, 2025

Hi there, that is the diagnosis, stage 4 with mets to liver, spine, and some lymph...

https://connect.mayoclinic.org/comment/1390993/

Discussion: Has anyone been diagnosed with neuroendocrine carcinoma?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 10, 2025

@ds231, you're right. Fenbendazole is formulated for veterinary use and can cause irreparable liver damage. -...

https://connect.mayoclinic.org/comment/1290388/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 26, 2025

I’m living with net as well, pancreas which has metastasized to my liver. Discovered about 5years...

https://connect.mayoclinic.org/comment/1252221/

Discussion: Is there a particular diet to have when starting Lanreotide injection?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 7, 2025

I was diagnosed 2 years ago, with stage 4 ,started in my lower intestines and metastasized...

https://connect.mayoclinic.org/comment/1202170/

Discussion: Living with Neuroendocrine NETS, any advice?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 2, 2025

Hello Karen (@immmm) - Welcome to Mayo Connect, thank you for being an advocate for your...

https://connect.mayoclinic.org/comment/167642/

Discussion: Lesions, Cystic liver mets, vs Tumors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 15, 2017

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

@fraaseo I live in Far North Qld Australia. I found out in 2021 I had net...

https://connect.mayoclinic.org/comment/1402161/

Discussion: My carcinoid tumor is inoperable: What are the best ways to control?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 26, 2025

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

Great Info. I am so sorry to hear of your reoccurrences and now mets to the...

https://connect.mayoclinic.org/comment/896402/

Discussion: NET - Insulinoma

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 15, 2023

I was diagnosed in 2012 as a typical mid-gut, Ileum primary, liver mets and lymphnode mets...

https://connect.mayoclinic.org/comment/869112/

Discussion: Life expectancy with NETs and lifetyle as it progresses

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 30, 2023

@helloitsme It is nice to see so many comments to you! Congrats for choosing Mayo Phoenix...

https://connect.mayoclinic.org/comment/851553/

Discussion: Just diagnosed: Metastatic NETs. Treatment?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 29, 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

Hello @bluedane and welcome to the NETs discussion on Mayo Clinic Connect. I am so glad...

https://connect.mayoclinic.org/comment/814509/

Discussion: Lost with no confirmation of NETs origin: Innumerable liver lesions

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 20, 2023

My sister was diagnosed with a well differentiated Pancreatic Neuroendocrine tumor Grade 3 Stage 4. It...

https://connect.mayoclinic.org/comment/1105243/

Discussion: Diagnosed with Stage 4 pancreatic neuroendocrine metastasized to liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 14, 2024

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