Neuroendocrine Tumors (NETs) Support Group

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Comments (2,337)

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

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

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

@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 am 69 years old and am diagnosed with multiple liver metastasis from lung carcinoid tumor....

https://connect.mayoclinic.org/comment/825019/

Discussion: Newly diagnosed-Primary Malignant Neuroendocrine of Lung

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 12, 2023

It’s so hard to generalize one experience to others except as an example. In 2014-15, I...

https://connect.mayoclinic.org/comment/1001387/

Discussion: Statistics on progression free survival while on SSA / Lanreotide

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 21, 2024

Hello @mukul123 and welcome to Mayo Connect. I see that you are looking for direction for...

https://connect.mayoclinic.org/comment/786179/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 18, 2022

You are on the right track by finding NET specialist! Relax, and give him your support!...

https://connect.mayoclinic.org/comment/1291405/

Discussion: Son, 48 diagnosed with PNET pancreatic cancer 8cm tail & spleen

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 27, 2025

@hopeful33250 Good to hear your pancreatic cyst story. Yes, once you have cancer you can’t help...

https://connect.mayoclinic.org/comment/955378/

Discussion: Anyone have a small pancreatic IPMN cyst that turned out to be cancer?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 28, 2023

I had a small bowel resection in 2007 because my carcinoid tumor had grown around several...

https://connect.mayoclinic.org/comment/874036/

Discussion: NETs: Scheduled for small intestine resection: What to expect?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 7, 2023

Hello, I am new to this forum and would like to know the following if it...

https://connect.mayoclinic.org/comment/640890/

Discussion: Carcinoid cancer: Want to meet others

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 30, 2021

Hang in there! I am having my 7th Lan injection tomorrow. Had distal pancreatectomy with spleen,...

https://connect.mayoclinic.org/comment/935344/

Discussion: Carcinoid syndrome; NET not found

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 24, 2023

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