Neuroendocrine Tumors (NETs) Support Group

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Sorry, but I have another question, I had surgery (distal) in 2022 and liver lesion in...

https://connect.mayoclinic.org/comment/1312450/

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

Support Group: Pancreatic Cancer

Posted: May 25, 2025

He had two tumors on his pancreas so they removed his pancreas in 2018. It has...

https://connect.mayoclinic.org/comment/292375/

Discussion: Multiple Endocrine Neoplasia 1 (MEN1): What treatments have you had?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 15, 2020

Hi I recently asked the same question about just getting a liver transplant and my surgeon...

https://connect.mayoclinic.org/comment/952416/

Discussion: Liver Transplant to Treat NETs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 23, 2023

I was at Mass general last summer and they seem to employ the ‘let’s watch it...

https://connect.mayoclinic.org/comment/884361/

Discussion: Feeling discouraged and too many specialists

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 24, 2023

Hi Teresa and tsabe2. At this time, I’m not able to provide any input to this...

https://connect.mayoclinic.org/comment/311781/

Discussion: Afinitor - Anyone have pneumonitis as a side effect?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 23, 2020

Thanks very much for your reply. I have been waiting for the Mayo Clinic E-Consult so...

https://connect.mayoclinic.org/comment/1161723/

Discussion: Dotatate lights only in liver, but report says metastatic to liver?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 23, 2024

First time post here. Briefly, my wife started losing weight and feeling fatigued in the first...

https://connect.mayoclinic.org/comment/866425/

Discussion: Diagnosed with Stage 4 pancreatic neuroendocrine metastasized to liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 25, 2023

@briana311 I was diagnosed in 8/22, grade 2 pancreatic NET. It has spread primarily to my...

https://connect.mayoclinic.org/comment/1530955/

Discussion: NETs growing despite 3 months of capecitabine and temozolomide

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 19 7:34pm

I want to echo what some have mentioned in this discussion. I don't recommend only relying...

https://connect.mayoclinic.org/comment/1540303/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 1 10:05am

https://connect.mayoclinic.org/comment/775875/

Discussion: Treatments for Carcinoids

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 21, 2022

I’m sure they will help! It might not be easy but you are going to a...

https://connect.mayoclinic.org/comment/1287245/

Discussion: Gastrinomas and Whipple procedure

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 22, 2025

Has your team discussed a liver directed therapy such as embolization? There are 3 types: bland,...

https://connect.mayoclinic.org/comment/1197420/

Discussion: Wondering if we are making the right choices in our NET fight.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 26, 2024

I have “innumerable” (probably about 80) liver mets. Unknown origin. Diagnosed January 2020. Grade 2/3, well-differentiated....

https://connect.mayoclinic.org/comment/796179/

Discussion: What topics do you want for the Neuroendocrine Support Group?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 13, 2023

@mdethardt Welcome to Mayo Connect. I can't disagree with your logic. I have a pnet that...

https://connect.mayoclinic.org/comment/1356508/

Discussion: NET tumor of pancreas (1 cm) diagnosed

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 25, 2025

Thanks! A normal life! That's great! Your CT was negative with tumors in SI causing a...

https://connect.mayoclinic.org/comment/1260147/

Discussion: Diagnosing small bowel NETs with carcinoid syndrome

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 17, 2025

I had bland embolization to liver in Jan 2024. High fever and nausea for days. Didn't...

https://connect.mayoclinic.org/comment/1422543/

Discussion: Anyone deal with severe pain after Y90 treatment?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 24, 2025

@ricki8- I have been on Lanreotide for 2 yrs on March 10 :). My gallbladder was...

https://connect.mayoclinic.org/comment/1255238/

Discussion: Living with Neuroendocrine NETS, any advice?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 11, 2025

Get it removed asap. If it spreads your going to be in trouble. I have NET...

https://connect.mayoclinic.org/comment/810674/

Discussion: Scared - Suspected NET on tail of the pancreas

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 13, 2023

My husband also has NET in small intestine and liver. Can someone tell me what symptoms...

https://connect.mayoclinic.org/comment/1425989/

Discussion: NETs with Liver metastasis: starting lanreotide injections

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 29, 2025

My husband’s journey started In 2015 with stomach pains nothing diagnosed. Then in 2019 he was...

https://connect.mayoclinic.org/comment/1121892/

Discussion: Pancreastatin level at 1500

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 11, 2024

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