Neuroendocrine Tumors (NETs) Support Group

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Comments (360)

Hi! I am also getting 4th mo SamotulineDepot injections due to small intestine NET primary with...

https://connect.mayoclinic.org/comment/810312/

Discussion: What's your NETs treatment and surveillance protocol?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 12, 2023

@dbamos1945 Very similar, well differentiated, grade 2, KI67- 6.6% Stage 4 , small intestine, metastasized to...

https://connect.mayoclinic.org/comment/1414315/

Discussion: I have a neuroendocrine tumour in the small bowel and liver lesions

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 13, 2025

I, too, am very interested in learning more about nutrition/diet to know what to eat or...

https://connect.mayoclinic.org/comment/275685/

Discussion: What topics do you want for the Neuroendocrine Support Group?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 1, 2019

TY. Interesting my oncologist didn't comment on replacing my liver as I have a similar situation...

https://connect.mayoclinic.org/comment/952673/

Discussion: Liver Transplant to Treat NETs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 23, 2023

I was diagnosed with NETs in November 2015 following small intestine resection surgery. I have been...

https://connect.mayoclinic.org/comment/843592/

Discussion: What do I need to know about NETS?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 15, 2023

I’m stage IV grade 2. Neuroendocrine, Primary in small intestine, metastatic to liver and other areas....

https://connect.mayoclinic.org/comment/812339/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 16, 2023

Hi @james8117, those are good questions to be asking as you prepare for surgery of your...

https://connect.mayoclinic.org/comment/767318/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 30, 2022

Hi, and thank you for your kind words. My husband is the patient. They told us...

https://connect.mayoclinic.org/comment/1284074/

Discussion: NET in jejunum spread to liver: Treatment options?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 17, 2025

I have Neuroendocrine tumors (small intestine metastases to liver). My treatment for the last year is...

https://connect.mayoclinic.org/comment/1017449/

Discussion: I have 3 neuroendocrine tumors in left lung: Can I handle radiation?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 17, 2024

Lots of information about these tests on the internet. My surgeons and Oncologist go straight to...

https://connect.mayoclinic.org/comment/1256144/

Discussion: Diagnosing small bowel NETs with carcinoid syndrome

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 12, 2025

I had colon cancer when I was 38 and they did a complete procto collectomy. The...

https://connect.mayoclinic.org/comment/1036092/

Discussion: Small bowel NET and colon cancer

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 18, 2024

i have half of my colon removed and my small intestine removed the only problem i...

https://connect.mayoclinic.org/comment/1251259/

Discussion: Anyone dealing with Carcinoid NETs with Diabetes?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 5, 2025

@zalda, I'd like to add my welcome. I'm glad that fellow NETs members like @mimisayhi and...

https://connect.mayoclinic.org/comment/1026156/

Discussion: I have a neuroendocrine tumour in the small bowel and liver lesions

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 2, 2024

Did the same thing come back in 2024? How are you doing now? I go for...

https://connect.mayoclinic.org/comment/1350366/

Discussion: Carcinoid cancer: Want to meet others

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 17, 2025

Low fibre diet was advised due to my small intestine net causing a possible bowel obstruction....

https://connect.mayoclinic.org/comment/1050410/

Discussion: Diet restrictions with Lanreotide?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 14, 2024

They aren't bad for me at all! They tell you to drink lots of fluids after...

https://connect.mayoclinic.org/comment/897671/

Discussion: How long do I wait between injections and PET scans.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 17, 2023

My surgery at Mayo in Jax is the 1st week in Nov where they will remove...

https://connect.mayoclinic.org/comment/764336/

Discussion: Just got the news… stage 2 Carcinoid tumors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 23, 2022

Hi, my wife will be meeting with the doctor tomorrow regarding NETS metastasizing in the small...

https://connect.mayoclinic.org/comment/1528904/

Discussion: Started PRRT treatment: Anyone experience tumor markers increasing?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 17 9:42am

Have they done a colonoscopy to see if there are NETs hanging out in the small...

https://connect.mayoclinic.org/comment/1484167/

Discussion: Diagnosis Frustrated: How you were diagnosed with NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 16 5:33pm

I was diagnosed in January that I had a NET. I had CT Scan and PET...

https://connect.mayoclinic.org/comment/1261431/

Discussion: Anyone have a neuroendocrine tumor in small intestine?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 18, 2025

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