Neuroendocrine Tumors (NETs) Support Group

Public Support Group

Follow for updates

Search discussions

Start a new discussion

1,626 total results

Comments (1,498)

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

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 5:03pm

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

I was in for a healthy heart check and the ultrasound showed liver spots. Didn’t really...

https://connect.mayoclinic.org/comment/729640/

Discussion: PRRT for NETs: Questioning whether I should continue or not

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 22, 2022

I was diagnosed with net cancer December 2020. Originated in small intestines and spread to liver....

https://connect.mayoclinic.org/comment/856717/

Discussion: Just diagnosed: Metastatic NETs. Treatment?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 8, 2023

full of gas i have net of small bowel tumor was removed 5/22, i have 3...

https://connect.mayoclinic.org/comment/789668/

Discussion: What helps with gas and pain after surgery?

Support Group: Cancer: Managing Symptoms

Posted: Dec 28, 2022

Hello @dak10, I so appreciate hearing from you again with some more information on your journey...

https://connect.mayoclinic.org/comment/827367/

Discussion: Newly diagnosed-Primary Malignant Neuroendocrine of Lung

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 17, 2023

I also have NET pancreas to liver and type 2 diabetes. I am taking CAPTEM. I...

https://connect.mayoclinic.org/comment/836209/

Discussion: Anyone dealing with Carcinoid NETs with Diabetes?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 2, 2023

When is your surgery? Or have you already had your surgery? If so, how did it...

https://connect.mayoclinic.org/comment/1122974/

Discussion: Pancreatic neuroendocrine insulinoma

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 13 2:13pm

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

@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

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

Your response is sincerely appreciated - My wife is scheduled for PRRT @Fred Hutch Seattle on...

https://connect.mayoclinic.org/comment/808550/

Discussion: Interested in hearing people's experiences with PRRT

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 9, 2023

Hello, My husband also has insulinoma. Pancreas metastasized to liver. We have found that a tablespoon...

https://connect.mayoclinic.org/comment/890321/

Discussion: NET - Insulinoma

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 5, 2023

I too am Atypical lung net. It has spread to liver and several vertebrae in my...

https://connect.mayoclinic.org/comment/939666/

Discussion: Atypical Lung NET treated with radiation: What was your outcome?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 1, 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

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 can't offer any advice but can empathize. Mine started in my small bowel in 2020...

https://connect.mayoclinic.org/comment/1171118/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 10 9:26am

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

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 6:56pm