Neuroendocrine Tumors (NETs) Support Group

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Comments (932)

@klpetts , Hi I read your posting of April 2020 that you were heading off to...

https://connect.mayoclinic.org/comment/871565/

Discussion: Interested in hearing people's experiences with PRRT

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 3, 2023

I have pnets pancreatic primary many liver tumors they are functional gastrinomas grade 2 ki67 7%...

https://connect.mayoclinic.org/comment/1341847/

Discussion: Y90 AND Captem Combo

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 5, 2025

I was diagnosed with NET (liver & thyroid) in Sept. 2023. Started Lanreotide shots then and...

https://connect.mayoclinic.org/comment/1404523/

Discussion: Lanreotide shot given too fast, any side effects?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 29, 2025

@jutebox42 & @hopeful33250 You asked about my Neuroendocrine Cancer diagnosis - dx October 2021 biopsy in...

https://connect.mayoclinic.org/comment/1251442/

Discussion: Anyone have side effects after Lanreotide injection?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 6, 2025

I had the Y90 In August of 2022 at University of Michigan as a follow up...

https://connect.mayoclinic.org/comment/1055893/

Discussion: Updating about My Lanreotide Injections & CT Scan

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 23, 2024

Hello Nana120, I have been on Lanreotide for 14 months and have lost at least 70-80%...

https://connect.mayoclinic.org/comment/1009284/

Discussion: Anyone have hair loss with lanreotide?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 4, 2024

5 months ago, I had a 'gut' feeling (no symptoms) and chose to pay for a...

https://connect.mayoclinic.org/comment/916496/

Discussion: Laparoscopic Possible Open Surgery Resection - Small Bowel NETS

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 21, 2023

Hi, His primary is undetermined. It has metastisized to liver, lymph nodes, mesentery, and the fat...

https://connect.mayoclinic.org/comment/911173/

Discussion: Has anyone had NETs metastasized to heart?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 11, 2023

@pete1962 Thanks for responding. I don’t remember your first post, if your diagnosis includes NET in...

https://connect.mayoclinic.org/comment/837367/

Discussion: Recurrence in Liver after Whipple

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 4, 2023

This can be so frustrating. Without symptoms, but an instinct, I chose to pay for an...

https://connect.mayoclinic.org/comment/1259307/

Discussion: Diagnosing small bowel NETs with carcinoid syndrome

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 16, 2025

Hi @marciamiller I also have DIPNECH and lung NETS (cancer). I’m guessing you saw Dr. Ramirez....

https://connect.mayoclinic.org/comment/1162740/

Discussion: Anyone have side effects after Lanreotide injection?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 25, 2024

My husband was diagnosed with NETs 5 years ago, had surgery and had been followed every...

https://connect.mayoclinic.org/comment/851255/

Discussion: Just diagnosed: Metastatic NETs. Treatment?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 29, 2023

@ahtaylor My wife’s primary tumor was a mass on the pancreas tail. Our initial findings of...

https://connect.mayoclinic.org/comment/828363/

Discussion: Recurrence in Liver after Whipple

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 19, 2023

Hello Everyone I also have NETs that has metastasized on the inside of my Liver. I...

https://connect.mayoclinic.org/comment/739390/

Discussion: NETs: Anyone has Liver debulking for liver metastasis?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 19, 2022

Hello! I have been diagnosed with pNET similarly (15×4.9×16cm) at the same time as endometrial cancer...

https://connect.mayoclinic.org/comment/1429987/

Discussion: Treatment options for a Mixed Adenoneuroendocrine Carcinoma (MiNEN)

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 3, 2025

I had neuroendocrine tumors in my small intestines. I had surgery in 2017, the surgeon removed...

https://connect.mayoclinic.org/comment/1110182/

Discussion: Anyone have side effects after Lanreotide injection?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 22, 2024

Hello kim1965! Hope the drs choose the right treatment after seeing the results of the MRI!...

https://connect.mayoclinic.org/comment/887702/

Discussion: Diagnosed with Stage 4 pancreatic neuroendocrine metastasized to liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 30, 2023

Hello @mimmy and welcome to Mayo Connect! I'm glad that you found this forum. It sounds...

https://connect.mayoclinic.org/comment/821922/

Discussion: Lanreotide Manufacturers: anyone have experience with either?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 6, 2023

Yes! I had the GJ tube removed Friday (3/3) - never used it, but had to...

https://connect.mayoclinic.org/comment/821228/

Discussion: PNET Surgery: My recovery journey

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 5, 2023

I, too, have metastatic innumerable liver lesions, as well as in my pelvis, lymph nodes, and...

https://connect.mayoclinic.org/comment/811172/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 14, 2023