Neuroendocrine Tumors (NETs) Support Group

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Comments (84)

I’ll speak to 3 & 4. My wife with NETs (ileum), 50 METS to liver has...

https://connect.mayoclinic.org/comment/134661/

Discussion: NET - Insulinoma

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 25, 2018

I wish I knew more of the symptoms you face other than feeling bad. Are you...

https://connect.mayoclinic.org/comment/1446800/

Discussion: How do I eat after digestive tract surgery?

Support Group: Digestive Health

Posted: Nov 25, 2025

Hi, I too have NETs that were discovered in my ileum after being in the ER...

https://connect.mayoclinic.org/comment/777826/

Discussion: NETs: Anyone has Liver debulking for liver metastasis?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 27, 2022

Hi, I had 1.5m of my ileum removed 2022 due to nets. Was in hospital for...

https://connect.mayoclinic.org/comment/1273504/

Discussion: Small Intestine Resection

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 3, 2025

I like the idea of no treatment plan. Do I really want to get a work-up...

https://connect.mayoclinic.org/comment/1484112/

Discussion: Neuroendocrine Tumor - no treatment plan method

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 16 4:15pm

i actually feel good since surgery. I have had check up every 6 months since surgery....

https://connect.mayoclinic.org/comment/1065049/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 9, 2024

@rose2522 i had constant GERD for years many endoscopies and testing showed nothing. 2015 had cyst...

https://connect.mayoclinic.org/comment/1441250/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 17, 2025

I also had multiple small lesions in my liver and a few larger ones. I decided...

https://connect.mayoclinic.org/comment/813447/

Discussion: Lost with no confirmation of NETs origin: Innumerable liver lesions

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 18, 2023

@dadcue i would do the scan so if you actually do have a net/s you can...

https://connect.mayoclinic.org/comment/1523385/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 9 3:13pm

@zacharycat I was allergic to the treatments back in 2005 but luckily I had a very...

https://connect.mayoclinic.org/comment/1530413/

Discussion: Dealing with Lutathera treatments alone: Tips?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 19 7:12am

@dadcue I'm not a doctor, so my opinion is just that an unqualified/unskilled opinion. For me...

https://connect.mayoclinic.org/comment/1543997/

Discussion: Neuroendocrine Tumor - no treatment plan method

Support Group: Neuroendocrine Tumors (NETs)

Posted: 3 days ago

Thanks for sharing, my experience was very similar (see below) additionally they removed the right side...

https://connect.mayoclinic.org/comment/1236619/

Discussion: I recently had surgery to remove NET in small intestine

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 14, 2025

Hi there, I'm new here. Doctors diagnosed me with a neuroendocrine tumor in the terminal ileum...

https://connect.mayoclinic.org/comment/1376327/

Discussion: Neuroendocrine Tumor

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 21, 2025

@kgrear I live in Cairns australia. No net specialist here. I have a fantastic medical team....

https://connect.mayoclinic.org/comment/1435374/

Discussion: S4, G2 NETS in mesentery. Declined Exploratory Surgery

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 10, 2025

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

My husband has much the same type of NET as you. It is grade 1 but...

https://connect.mayoclinic.org/comment/837108/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 3, 2023

I don’t want to scare you, but it was painful 5 hour surgery. I was hospitalized...

https://connect.mayoclinic.org/comment/1309905/

Discussion: Primary Small Bowel NETS, Liver Mets

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 21, 2025

@chaplaindan In addition to the previous post (well done) - Based on my wife's battle with...

https://connect.mayoclinic.org/comment/1464472/

Discussion: Anyone had a significant difference between a CT and MRI reading?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 20, 2025

I was first diagnosed with NETs in 2004 so I’ve had LOTS of lab-work done over...

https://connect.mayoclinic.org/comment/889603/

Discussion: NET symptoms despite follow-up lab work ok

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 3, 2023

Hi, I am living in Adelaide. South Australia. I went through chemo with non Hodgkins lymphoma...

https://connect.mayoclinic.org/comment/819077/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 1, 2023

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