Neuroendocrine Tumors (NETs) Support Group

Public Support Group

Follow for updates

Search discussions

Start a new discussion

1,010 total results

Comments (932)

@tiambeth70: You have found a good source of information, both from Mentors and NET peers going...

https://connect.mayoclinic.org/comment/1507074/

Discussion: Husband has miliary seeding metastasis

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 16 9:05am

Hello I too have a NET tumor on my left lung that has metastasized to my...

https://connect.mayoclinic.org/comment/955119/

Discussion: Newly diagnosed-Primary Malignant Neuroendocrine of Lung

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 28, 2023

@aliatl I’ll try to keep it short, our diagnosis hopefully will help you some. My wife...

https://connect.mayoclinic.org/comment/823608/

Discussion: NET lung with Liver Metastasis (stage 4)

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 9, 2023

I was diagnosed with Carcinoid in 2007. The mass had grown around several loops of my...

https://connect.mayoclinic.org/comment/804478/

Discussion: Lanreotide Manufacturers: anyone have experience with either?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 31, 2023

@vinnie694 & @Ins83: DIDDO Ins83! I think Vinnie and my NET small bowel cancer is very...

https://connect.mayoclinic.org/comment/1414228/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 12, 2025

While my tumors have been located and biopsies and I’m on my seventh injection of Lanreotide...

https://connect.mayoclinic.org/comment/933719/

Discussion: Carcinoid syndrome; NET not found

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 21, 2023

"My question is simply, would not eating these foods if I am not having problems change...

https://connect.mayoclinic.org/comment/1143047/

Discussion: Diet restrictions with Lanreotide?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 17, 2024

My condition is similar stage 4 due to it metastasizing to the liver, origin is the...

https://connect.mayoclinic.org/comment/1106025/

Discussion: Diagnosed with Stage 4 pancreatic neuroendocrine metastasized to liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 15, 2024

Hello. I wanted to add some information about the testosterone issues you mentioned. My husband was...

https://connect.mayoclinic.org/comment/1385205/

Discussion: Has anyone had NET show up on CT scan, I had CT scan in 23

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 2, 2025

Hi I was sick for a long time until we accidentally discovered it was and net...

https://connect.mayoclinic.org/comment/1234800/

Discussion: New Diagnosis: husband's labs are all indicating NET

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 11, 2025

Manabearpr71: NRT? Are you referring to NET cancer? If your daughter gets Pathologist’s biopsy results identifying...

https://connect.mayoclinic.org/comment/1442846/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 19, 2025

@donbarks: I too have primary in small bowel (grade 1, stage4) with metastases in liver (no...

https://connect.mayoclinic.org/comment/1497043/

Discussion: Stable metastatic NET – should I be pushing harder for PRRT?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 3 9:02am

Thanks for your post! I thought I might be the only one with reactions to octreotide!...

https://connect.mayoclinic.org/comment/994669/

Discussion: Rash/Hives with Octreotide injection

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 9, 2024

Hi I am so sorry to hear of your situation I had primary NET liver cancer...

https://connect.mayoclinic.org/comment/776351/

Discussion: Does sandostatin work?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 22, 2022

Hi, 1 year ago I had surgery to remove two liver mets. My surgeon said that...

https://connect.mayoclinic.org/comment/758820/

Discussion: Long Time Survivor With Concerns re Metastasis

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 8, 2022

@tgsenn70: I am also NET small intestine primary with liver metastases, diagnosed 10/2022 with 28 day...

https://connect.mayoclinic.org/comment/1282563/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 15, 2025

My wife was diagnosed in April 2022, with NET with primary on pancreas, and too many...

https://connect.mayoclinic.org/comment/1207477/

Discussion: Any advice for someone recently diagnosed with NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 9, 2025

Have you had a PET scan? 60% of the time NETs have spread before they find...

https://connect.mayoclinic.org/comment/1204646/

Discussion: Can anyone share information about NET in small intestine?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 5, 2025

Great to hear about stabilization of the disease after the second dose of Lu-177! My son...

https://connect.mayoclinic.org/comment/163150/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 23, 2017

Endocrine tumors are difficult to diagnosed and in our opinion, difficult to treat. My husband was...

https://connect.mayoclinic.org/comment/1498542/

Discussion: Stable metastatic NET – should I be pushing harder for PRRT?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 5 8:36am