Neuroendocrine Tumors (NETs) Support Group

Public Support Group

Follow for updates

Search discussions

Start a new discussion

420 total results

Comments (368)

Hi My husband has a similar situation. He was diagnosed last March with a grade 1,...

https://connect.mayoclinic.org/comment/1216829/

Discussion: I am one year out with my diagnosis just finished 4th round of PRRT

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 19, 2025

They found a number of NET's on a standard CT scan done in March 2025 based...

https://connect.mayoclinic.org/comment/1384956/

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

@stevestenberg31 he did last week! Unfortunately not enough uptake of the tracer so PRRT is not...

https://connect.mayoclinic.org/comment/824943/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 12, 2023

I was dx in may with net in small intestine tumor was removed but pep scan...

https://connect.mayoclinic.org/comment/758557/

Discussion: Prognosis for Metastasized NET

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 7, 2022

So you've had a CT with contrast and a 9mm mass was found in or near...

https://connect.mayoclinic.org/comment/1348238/

Discussion: What's next after SiNETS?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 14, 2025

@Kathleenandbob: Thank you for giving me realistic hope. I’m only into 1yr of 28day shots, but...

https://connect.mayoclinic.org/comment/970018/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 24, 2023

Hello @pnelson5220 and welcome! I appreciate you sharing about your NETs journey. The discovery and treatment...

https://connect.mayoclinic.org/comment/1393556/

Discussion: Has anyone had NET show up on CT scan, I had CT scan in 23

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 15, 2025

Well, officially not yet. That's just what the ct report says. That or a GIST. But...

https://connect.mayoclinic.org/comment/1331527/

Discussion: Diagnosed with NET si-NET Stage 1 Grade 1

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 20, 2025

Dianamontsno your question is relative. It depends on your symptoms. I’m no MD, but will share...

https://connect.mayoclinic.org/comment/812932/

Discussion: Neuroendocrine tumor: What tests are used for diagnosis?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 17, 2023

@nannybb I just copied this from Mayo's website: Carcinoid tumors are a type of slow-growing cancer...

https://connect.mayoclinic.org/comment/1430781/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 4, 2025

Hello. Anyone out there diagnosed with grade one tumor of small intestine? I had section of...

https://connect.mayoclinic.org/comment/813197/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 17, 2023

@hopeful33250 In short bowel syndrome (SBS), the body has difficulty absorbing water because a significant portion...

https://connect.mayoclinic.org/comment/1429335/

Discussion: How do I eat after digestive tract surgery?

Support Group: Digestive Health

Posted: Nov 2, 2025

Hi, my wife will be meeting with the doctor tomorrow regarding NETS metastasizing in the small...

https://connect.mayoclinic.org/comment/1528904/

Discussion: Started PRRT treatment: Anyone experience tumor markers increasing?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 17 9:42am

Hello @stevestenberg31, I would like to join Colleen, @colleenyoung, in welcoming you to the NETs discussion...

https://connect.mayoclinic.org/comment/829489/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 21, 2023

I am Small Intestine primary with Liver metastases… Grade 1; Stage 4. Every person with NET...

https://connect.mayoclinic.org/comment/922667/

Discussion: Just diagnosed with pancreatic NET stage 1

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 1, 2023

Did your doctors do a Chromogranin A test to determine if you have high levels? That...

https://connect.mayoclinic.org/comment/1484142/

Discussion: Did anyone else have a long struggle to getting a NETs diagnosis?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 16 5:06pm

You had 2 ft of small intestine removed due to NETs. I'm assuming you also had...

https://connect.mayoclinic.org/comment/1467938/

Discussion: Lanreotide side effects: Anyone having GI issues?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 26, 2025

Hi, I had a ct scan for something else and many tumors showed up in the...

https://connect.mayoclinic.org/comment/1371172/

Discussion: Surgery on Small Intestine

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 15, 2025

Thank you so much for the responses! I have been out of pocket and just now...

https://connect.mayoclinic.org/comment/167648/

Discussion: Lesions, Cystic liver mets, vs Tumors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 17, 2017

Hello @carver1164 and welcome to Connect. As you have been diagnosed with a GIST or neuroendocrine...

https://connect.mayoclinic.org/comment/1332274/

Discussion: Diagnosed with NET si-NET Stage 1 Grade 1

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 21, 2025

1
…
3
4
5
6
7
…
19

Follow

1975

58 seconds ago

Visiting Mayo Clinic

Follow

7083

12 minutes ago

Digestive Health

Follow

19102

25 minutes ago

Melanoma & Skin Cancer

Follow

1259

42 minutes ago

Follow

8571

46 minutes ago