Neuroendocrine Tumors (NETs) Support Group

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Comments (2,365)

I'm so sorry you're going through this. My husband's story is similar to yours, but your...

https://connect.mayoclinic.org/comment/1330919/

Discussion: Neuroendocrine tumor pancreatic tail

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 19, 2025

Have you gotten opinions? I was diagnosed some 30 years ago with fatty liver disease. I...

https://connect.mayoclinic.org/comment/1213641/

Discussion: Living with Neuroendocrine NETS, any advice?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 15, 2025

Thanks for the update. It is helpful to know how things evolve. So tumors were identified...

https://connect.mayoclinic.org/comment/1171377/

Discussion: Experience w/ watch and wait approach for metastatic liver tumor

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 10, 2024

@matt76 I have been there. I got progressively sicker over three years and lost over 100...

https://connect.mayoclinic.org/comment/1541843/

Discussion: Neuroendocrine tumors in small bowel, omentum, on ovaries, appendix

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 3 9:32am

Please press about having gall bladder removed. I went to ER for another reason but found...

https://connect.mayoclinic.org/comment/1318595/

Discussion: Anyone else get bloating and abdominal pain from NETS or Lanreotide?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 2, 2025

I understand you have had neuroendocrine tumors for many years. Were you receiving any treatment prior...

https://connect.mayoclinic.org/comment/1171846/

Discussion: Newly diagnosed - neuroendocrine tumor in intestines

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 11, 2024

This is the first case of someone using this method I have seen on this Forum....

https://connect.mayoclinic.org/comment/1146038/

Discussion: PRRT side effects and results

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 23, 2024

Yes, I am. I have Stage Four carcinoid cancer. The original site was my ileum. It...

https://connect.mayoclinic.org/comment/988900/

Discussion: Laparoscopic Possible Open Surgery Resection - Small Bowel NETS

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 30, 2023

I was under the impression the shot was suppose to keep them from growing and i...

https://connect.mayoclinic.org/comment/1379863/

Discussion: Any one with Neuroendocrine tumors getting the shot once a month?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 26, 2025

@stevestenburg31: You have been given good advise to ask for a MRI scan. I would add:...

https://connect.mayoclinic.org/comment/1309108/

Discussion: Primary Small Bowel NETS, Liver Mets

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 21, 2025

Living in Texas, MD Anderson is a great facility. I live in tulsa Oklahoma. I've also...

https://connect.mayoclinic.org/comment/933185/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 20, 2023

2 weeks after blan embolization of my liver left side severe pain in my left side...

https://connect.mayoclinic.org/comment/887516/

Discussion: Bland embolization or transarterial chemoembolization (TACE)

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 30, 2023

At the initial CT scan she had 10 hypodense lesions on her liver one measured 3.5...

https://connect.mayoclinic.org/comment/881571/

Discussion: My Sister and Best Friend

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 19, 2023

My Chromogranin A was 1507 last year and the PET was negative. In February I was...

https://connect.mayoclinic.org/comment/880883/

Discussion: High or Fluctuating Chromogranin A Level: What does it mean?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 18, 2023

Maybe ask you doctor about everolimus. It seemed to help my husband but was at same...

https://connect.mayoclinic.org/comment/837879/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 5, 2023

I know I still have lesions on my liver, not sure on pancreas. For me it...

https://connect.mayoclinic.org/comment/836863/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 3, 2023

@stageivsurvivor hi, I read the trial report. We're you the only PACC patient? There seems no...

https://connect.mayoclinic.org/comment/1428603/

Discussion: Anyone have Pancreatic Acinar Cell Carcinoma?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 1, 2025

@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

We 'Zebras' will likely have different reactions to treatments. The Oncologist (specializing in NET's) is the...

https://connect.mayoclinic.org/comment/1232825/

Discussion: Lanreotide Question: Why start before the next scan?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 9, 2025

I was diagnosed with stage 4 Merkel cell carcinoma in Jan 2022 when I developed a...

https://connect.mayoclinic.org/comment/966112/

Discussion: Merkel Cell Carcinoma: I'd like to hear from others

Support Group: Melanoma & Skin Cancer

Posted: Nov 16, 2023

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