Neuroendocrine Tumors (NETs) Support Group

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Comments (2,370)

It just makes me nervous there is so few cases that I have found that a...

https://connect.mayoclinic.org/comment/952691/

Discussion: Liver Transplant to Treat NETs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 23, 2023

Small intestine surgery in 1998, liver surgery in 2016, PRRT beginning this year. Two treatments, two...

https://connect.mayoclinic.org/comment/728930/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 20, 2022

I have we'll differentiated, grade 2 NET in tail of pancreas and spread to liver. Have...

https://connect.mayoclinic.org/comment/1266440/

Discussion: Well differentiated Neuroendocrine Grade 2 in rectum

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 25, 2025

Wondering How old is your wife? How big and how many tumors? How is the Nets...

https://connect.mayoclinic.org/comment/1197596/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 26, 2024

Hi. Glad to have friends on the subject. Just had surgery-ilioectemy, lymph nodes were cancerous. New...

https://connect.mayoclinic.org/comment/817446/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 26, 2023

Hello Theresa. Can you tell me how serious a descending colon NET that has metastasized to...

https://connect.mayoclinic.org/comment/792586/

Discussion: Newly diagnosed - neuroendocrine tumor in intestines

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 5, 2023

@lindabees hi my sis hv stage 4 grade 3 PNET ,Liver modules.Captem doesn't work.did etopside and...

https://connect.mayoclinic.org/comment/1410555/

Discussion: Y90 AND Captem Combo

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 7, 2025

Hello. I wanted to add some information about the testosterone issues you mentioned. My husband was...

https://connect.mayoclinic.org/comment/1385205/

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

So glad to find this! Had NET surgery small intestine and mesentery in 2015 after diagnosis...

https://connect.mayoclinic.org/comment/827137/

Discussion: Long Time Survivor With Concerns re Metastasis

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 16, 2023

I am a patient of Dr Starr's at Mayo Clinic Jacksonville. My NETS were ileum primary...

https://connect.mayoclinic.org/comment/876912/

Discussion: Where can I find a carcinoid syndrome specialist in Florida?!

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 12, 2023

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

Good day, Yes, I think this is my case. Mine is 9mm and mean. I am...

https://connect.mayoclinic.org/comment/1350762/

Discussion: What's next after SiNETS?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 18, 2025

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

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

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

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

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

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

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