Neuroendocrine Tumors (NETs) Support Group

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I have been with Mayo in Rochester since Feb 2020. I have grade 3 NETs in...

https://connect.mayoclinic.org/comment/765344/

Discussion: Anyone gone to Mayo Clinic in Rochester Minnesota for carcinoid tumors?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 25, 2022

Unfortunately I have found out that Medicare only approves medical nutrition counseling for Diabetes and kidney...

https://connect.mayoclinic.org/comment/1275580/

Discussion: NETS and Nutrition

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 6, 2025

Hello @juandixon It has been a few weeks since your last post and I was wondering...

https://connect.mayoclinic.org/comment/814192/

Discussion: Gynecologic neuroendocrine metastasized to lungs: Need a specialist

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 20, 2023

Hello @maryluph1953 I see that you are in the process of treatment for Merkel Cell Carcinoma...

https://connect.mayoclinic.org/comment/1155843/

Discussion: Merkel Cell Carcinoma: I'd like to hear from others

Support Group: Melanoma & Skin Cancer

Posted: Oct 12, 2024

My husband has Net that metastasized to his liver. We started at MGH but are currently...

https://connect.mayoclinic.org/comment/884054/

Discussion: Feeling discouraged and too many specialists

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 24, 2023

I have been on Lanreotide ( every 4 weeks) for 2+ yrs now for pNET with...

https://connect.mayoclinic.org/comment/1279952/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 12, 2025

@kc43 how interesting that the initials in your mayo name of @kc43, is the exact initials...

https://connect.mayoclinic.org/comment/1110663/

Discussion: newly diagnosed pNET on tail of pancreas

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 23, 2024

I believe they were all supposed to shrink both source and liver tumors. The source tumor...

https://connect.mayoclinic.org/comment/1356794/

Discussion: NET tumor of pancreas (1 cm) diagnosed

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 26, 2025

Actually he had already had his pancreatic primary removed by a net specialist surgeon at Stanford....

https://connect.mayoclinic.org/comment/1338518/

Discussion: Y90 AND Captem Combo

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 30, 2025

Yes...mine were found in the lesser curve of My stomach. My Gastroenterologist wants to check my...

https://connect.mayoclinic.org/comment/872777/

Discussion: Neuroendocrine tumor and carcinoid tumor

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 5, 2023

@nannybb Just had a liver debulking with him and was discharged yesterday. Dr Pegna is a...

https://connect.mayoclinic.org/comment/1541656/

Discussion: I am 75 and have carcinoid tumors NET in lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 3 6:18am

I had surgery (Whipple) to remove a functioning NET from the head of my Pancreas after...

https://connect.mayoclinic.org/comment/773459/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 15, 2022

I had a very small carcinoid tumor removed in 2015 on my first colonoscopy that was...

https://connect.mayoclinic.org/comment/1146694/

Discussion: After initial tests/consults at Mayo: When does NETs treatment start?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 24, 2024

Hello! I was diagnosed with pNET last december (2022). Grade 2 stage 4. Had surgery on...

https://connect.mayoclinic.org/comment/896311/

Discussion: More info on gastric NET w/liver mets and progression of symptoms

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 15, 2023

I have an unknown primary They think in my small intestines but it isn’t showing on...

https://connect.mayoclinic.org/comment/862966/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 19, 2023

Sorry to hear that Delores. I was diagnosed with stage four pancreatic cancer that spread to...

https://connect.mayoclinic.org/comment/842181/

Discussion: What do I need to know about NETS?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 12, 2023

@andy2020 My wife is also taking the Cape and Temoz, in the pill version. She has...

https://connect.mayoclinic.org/comment/810994/

Discussion: Anyone have a neuroendocrine tumor (NET) in the spine?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 13, 2023

Thank you for sharing your information. 10/07/22 2nd opinion verified tumor as Carcinoid. PET revealed liver...

https://connect.mayoclinic.org/comment/775983/

Discussion: Treatments for Carcinoids

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 21, 2022

I have Pnet with 23 tumors on my liver, and else where. They are looking at...

https://connect.mayoclinic.org/comment/712279/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 28, 2022

@ricki8 Thank you for your reply. I wish you the very best for the future. Hopefully...

https://connect.mayoclinic.org/comment/1466168/

Discussion: Primary Small Bowel NETS, Liver Mets

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 22, 2025

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