Neuroendocrine Tumors (NETs) Support Group

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Comments (2,367)

I have just been diagnosed with NET tumors in my abdomen and am starting with MRI's,...

https://connect.mayoclinic.org/comment/1454524/

Discussion: Cost of treatment

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 6, 2025

I don't know your story... sorry. I got progressively sicker for over 3 years before finally...

https://connect.mayoclinic.org/comment/936712/

Discussion: Type 1 Neuroendocrine Tumor with no risk: What should I ask doctor?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 26, 2023

I didn’t have a whipped but have a pancreatic tumor and numerous liver tumors. I also...

https://connect.mayoclinic.org/comment/934278/

Discussion: Ways to control hypoglycemia caused by insulinoma in pancreas?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 22, 2023

They found a number of NET's on a standard CT scan done in March 2025 based...

https://connect.mayoclinic.org/comment/1384956/

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

@k8lyn23 i was diagnosed on 1/5/23 via a biopsy with approx 25 cancerous lesions on my...

https://connect.mayoclinic.org/comment/812349/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 16, 2023

In my opinion, you have the right attitude! Someone somewhere has it worse than we do....

https://connect.mayoclinic.org/comment/1206709/

Discussion: Living with Neuroendocrine NETS, any advice?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 8, 2025

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

Happy to here you doing better , I just joined this group and it’s paying off...

https://connect.mayoclinic.org/comment/747593/

Discussion: Treatments for Carcinoids

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 9, 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

I agree with Linda totally. I was diagnosed in 2013 and likely had this cancer much...

https://connect.mayoclinic.org/comment/1273880/

Discussion: Found out my dad has cancer: They say it’s Neuroendocrine

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 4, 2025

I have this disease and had my last chemo infusion was 3 wks. ago. They lasted...

https://connect.mayoclinic.org/comment/1059061/

Discussion: Anyone have Pancreatic Acinar Cell Carcinoma?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 28, 2024

Hi everyone, I’m a 59 old male who was diagnosed with stage 4 Neuroendocrine/ acinar cancer...

https://connect.mayoclinic.org/comment/796920/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 15, 2023

@osiejay26… I hope you have received results of your recent scans. Since I have NET with...

https://connect.mayoclinic.org/comment/805406/

Discussion: Straight to the liver: Anyone have NETs originating in strange areas?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 2, 2023

I had net tumor on small intestine was removed with 3ft of intestine on 5/22, looks...

https://connect.mayoclinic.org/comment/753325/

Discussion: Newly diagnosed with NET in liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 24, 2022

It depends on the tumor type, biology, location, and treatment response. Overall, liver lesions are very...

https://connect.mayoclinic.org/comment/1315812/

Discussion: Pancreatic Cancer Q&A with Dr. Stauffer, Mayo Surgeon: Archive

Support Group: Pancreatic Cancer

Posted: May 29, 2025

Seems like it is functional gastrinoma tumor and so is Jon with symptoms of diaharrea. Whipple...

https://connect.mayoclinic.org/comment/1288593/

Discussion: Gastrinomas and Whipple procedure

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 24, 2025

I just had to look up Sandostatin. 😊 It looks like maybe it’s used for diarrhea....

https://connect.mayoclinic.org/comment/1205405/

Discussion: Anyone had a large NET in the liver? What treatment did you have?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 6, 2025

Hi. I also have NET starting in the lung. It has spread to liver and lymph...

https://connect.mayoclinic.org/comment/835071/

Discussion: Newly diagnosed-Primary Malignant Neuroendocrine of Lung

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 31, 2023

Today I had a visit with my oncologist after the surgery. Original huge tumor of the...

https://connect.mayoclinic.org/comment/823714/

Discussion: PNET Surgery: My recovery journey

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 9, 2023

Hello @grandfather2, and welcome to the NETs support group on Mayo Clinic Connect. It sounds like...

https://connect.mayoclinic.org/comment/1425253/

Discussion: NETs with Liver metastasis: starting lanreotide injections

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 28, 2025

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