Neuroendocrine Tumors (NETs) Support Group

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Comments (400)

Hi, My name is Penny. My wife, Cindy, had surgery on December 6 in which they...

https://connect.mayoclinic.org/comment/797408/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 16, 2023

I had surgery for carcinoid tumors in my small bowel and abdominal cavity 12 years ago,...

https://connect.mayoclinic.org/comment/752939/

Discussion: Carcinoid cancer: Want to meet others

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 23, 2022

My husband was diagnosed with GTSBnet grade1-grade2 well-differented tumor 3 years ago. First you have to...

https://connect.mayoclinic.org/comment/1204614/

Discussion: Can anyone share information about NET in small intestine?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 5, 2025

I was diagnosed Dec. 2021 Tumors started in the small intestines and metastasized to the liver...

https://connect.mayoclinic.org/comment/1035643/

Discussion: What questions should I ask oncologist tumor types and chemo treatment

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 18, 2024

I have an unknown primary They think in my small intestines but it isn’t showing on...

https://connect.mayoclinic.org/comment/862966/

Discussion: Anyone else get bloating and abdominal pain from NETS or Lanreotide?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 19, 2023

I was 39 when the first tumor was discovered in between my small and large intestine....

https://connect.mayoclinic.org/comment/1380376/

Discussion: Any one with Neuroendocrine tumors getting the shot once a month?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 27, 2025

It’s never to late you come to the right place , I’m a Neuroendocrine survivor I...

https://connect.mayoclinic.org/comment/768090/

Discussion: Newly diagnosed - neuroendocrine tumor in intestines

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 1, 2022

Good morning, I was diagnoses with Stage 4 NET's in December 2022 primary in small intestines...

https://connect.mayoclinic.org/comment/1476398/

Discussion: What does the future look like for a stage 4 NET patient?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 7 7:59am

I also have Grade 2, KI - 67 of 6.6% Stage 4, metastasized from small intestines...

https://connect.mayoclinic.org/comment/1261758/

Discussion: Liver function (birirubin, globulin, glucose, iron) and Octreotide

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 19, 2025

I have short gut syndrome. I only have 2ft of my small intestines. I had a...

https://connect.mayoclinic.org/comment/1428178/

Discussion: How do I eat after digestive tract surgery?

Support Group: Digestive Health

Posted: Nov 1, 2025

@taly This is what I do when I plan to travel any distance and in fact...

https://connect.mayoclinic.org/comment/1662793/

Discussion: How to Prepare for Life without an Ileocecal Valve

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 4 7:29am

I found out 3 years ago that I have net cancer. Originated in small intestines and...

https://connect.mayoclinic.org/comment/848467/

Discussion: Differentiating Carcinoid syndrome from MCAS?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 24, 2023

I was diagnosed 17 months ago with a metastatic stage 4, grade 2-3 small intestinal NET....

https://connect.mayoclinic.org/comment/1165976/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 1, 2024

I was diagnosed in March 2018 with NETs in multiple locations after having a blockage in...

https://connect.mayoclinic.org/comment/807089/

Discussion: Interested in hearing people's experiences with PRRT

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 6, 2023

When I found out that I had to have surgery on my stomach because it was...

https://connect.mayoclinic.org/comment/835923/

Discussion: Anyone have a stomach NET?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 1, 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

@taly Hello! Keeping good thoughts for your upcoming surgery! I was diagnosed in 2020 with Stage...

https://connect.mayoclinic.org/comment/1647624/

Discussion: First Appt with Surgeon Oncologist for SB NET

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 16 4:47pm

@dbjoyce I live in Cairns Australia and had net tumours removed from my ileum in 2022....

https://connect.mayoclinic.org/comment/1562928/

Discussion: I have a neuroendocrine tumour in the small bowel and liver lesions

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 30 5:09am

My NET’s were discovered by my gastroenterologist during reviewing a CT scan after I had a...

https://connect.mayoclinic.org/comment/1177879/

Discussion: How many doctors did you see to get to your NETS diagnosis?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 22, 2024

Hi all, hoping spring is good and well for you. I’m circling back to my post...

https://connect.mayoclinic.org/comment/1275884/

Discussion: Cu-64 Dotatate PET results show no malignancy. What’s next?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 6, 2025

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