Neuroendocrine Tumors (NETs) Support Group

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@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

I’m realizing that I should have changed the title of my post rather than just adding...

https://connect.mayoclinic.org/comment/1123401/

Discussion: First Lanreotide Injection: Any tips about diet and side effects?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 14, 2024

I see that enucleation means removing the tumor without cutting into it. Probably mine was too...

https://connect.mayoclinic.org/comment/1344540/

Discussion: NET tumor of pancreas (1 cm) diagnosed

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 9, 2025

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

No I had a lumpectomy in Feb. and now it has shown up blow my right...

https://connect.mayoclinic.org/comment/1155643/

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

Support Group: Melanoma & Skin Cancer

Posted: Oct 11, 2024

I have not had the surgery, but I had a very similar diagnosis other than it...

https://connect.mayoclinic.org/comment/1320545/

Discussion: PNET in Tail of Pancreas, Portal and Splenic Veins

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 4, 2025

Your case sounds almost like mine. My lung tumor is rarely mentioned & the focus seems...

https://connect.mayoclinic.org/comment/1056351/

Discussion: Updating about My Lanreotide Injections & CT Scan

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 24, 2024

I have a pancreatic neuroendocrine tumor that spread to my liver and bones. I have been...

https://connect.mayoclinic.org/comment/1351956/

Discussion: Carcinoid cancer: Want to meet others

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 19, 2025

@hopeful33250 Hi dear Many thanks for the useful links. Appreciate your reply and your caring Actually...

https://connect.mayoclinic.org/comment/163162/

Discussion: How to get a second opinion for an international patient??

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 27, 2017

Glad to join this group. My tumor on the outside of the small intestine was found...

https://connect.mayoclinic.org/comment/886230/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 27, 2023

Hello. Just wanted to share that I did have liver mets that they thought were hemangiomas...

https://connect.mayoclinic.org/comment/749213/

Discussion: Liver mets mistaken as hemangioma or harmatoma on MRI

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 13, 2022

@hopeful33250 I had what I thought was a bad stomach bug, turned out to be a...

https://connect.mayoclinic.org/comment/1425292/

Discussion: NETs with Liver metastasis: starting lanreotide injections

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 28, 2025

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