Neuroendocrine Tumors (NETs) Support Group

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Comments (2,370)

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

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 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

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

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 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

@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

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

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

Morning! My primary was on my ilieum which metastasized to my liver and pancreas. I was...

https://connect.mayoclinic.org/comment/897949/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 18, 2023

They call the disease Zebras because no 2 are the same I never had a hot...

https://connect.mayoclinic.org/comment/1196548/

Discussion: What does my dentist need to know about my NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 24, 2024

Our case has moved from diagnosis of mass on pancreas with spread to liver. Kim finished...

https://connect.mayoclinic.org/comment/942959/

Discussion: Interested in hearing people's experiences with PRRT

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 6, 2023

A 10 cm tumor was incidentally discovered on CT Scan in the fall of 2016. Was...

https://connect.mayoclinic.org/comment/790795/

Discussion: Advanced metastatic paraganglioma diagnosis

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 31, 2022

I was diagnosed with NET in the Liver with multiple spots, and a mass on my...

https://connect.mayoclinic.org/comment/754995/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 28, 2022

Hello Just had my second PRRT session. NETS started in my liver and despite surgery removing...

https://connect.mayoclinic.org/comment/1528670/

Discussion: Interested in hearing people's experiences with PRRT

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 17 1:10am

An update to my post in May where I started Cabo 40mg. In December the tumor...

https://connect.mayoclinic.org/comment/1497731/

Discussion: Anyone have experience with cabozantinib (Cabometyx)?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 4 6:52am

I know Dr. Sonbol myself. Started off with CAPTEM and everything shrunk. I completed 13 cycles...

https://connect.mayoclinic.org/comment/1123223/

Discussion: Everolimus for multiple Neuroendocrine tumors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 13, 2024

I have NET cancer of the liver it started in the small intestine tumor was removed...

https://connect.mayoclinic.org/comment/750858/

Discussion: Newly diagnosed with NET in liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 17, 2022

Don’t forget Lanreotide also causes exhaustion atleast it did for me I have an unknown primary...

https://connect.mayoclinic.org/comment/978236/

Discussion: After liver embolization: Looking for the best diet + food suggestions

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 10, 2023

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