Neuroendocrine Tumors (NETs) Support Group

Public Support Group

Follow for updates

Search discussions

Start a new discussion

122 total results

Comments (98)

@mamajeanne I have a primary pancreatic NET with liver metastasis. Other than the abdominal pain, did...

https://connect.mayoclinic.org/comment/1569614/

Discussion: New to the group and cancer journey: Liver NETs

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 8 8:51am

I have Neuro endocrine cancer in a 3 cm tumor near the tail of my pancreas,...

https://connect.mayoclinic.org/comment/1572277/

Discussion: Why do I get so tired so easy?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 11 2:46pm

@hopeful33250 Results from my Dotatate Scan are back. It doesn't seem so good but it probably...

https://connect.mayoclinic.org/comment/1539723/

Discussion: Neuroendocrine Tumor - no treatment plan method

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 31 2:02pm

@cindypat1 Let's see what happens in May. Keep positive thoughts. A grade 2 isn't the fastest...

https://connect.mayoclinic.org/comment/1518109/

Discussion: New spots showing up

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 2 6:10pm

@seesspotz Hi and welcome to Mayo Connect. I was diagnosed with a pancreatic NET that has...

https://connect.mayoclinic.org/comment/1552948/

Discussion: Liver Mets treatment options for carcinoid NET

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 17 2:48pm

@timaudette I was diagnosed in Jan.2025 with a tumor on the distal end of my pancreas...

https://connect.mayoclinic.org/comment/1551095/

Discussion: Severe itching from liver metastasis (NETs)

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 15 10:09am

I was diagnosed with stage 4 pancreatic NET with liver metastasis in 8/22. I learned what...

https://connect.mayoclinic.org/comment/995254/

Discussion: Diagnosed with Stage 4 pancreatic neuroendocrine metastasized to liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 10, 2024

I have pancreatic neuroendocrine tumor with liver metastasis. It is grade 1. I am scheduled for...

https://connect.mayoclinic.org/comment/992109/

Discussion: Diagnosed with Stage 4 pancreatic neuroendocrine metastasized to liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 5, 2024

Hi Joy, each case of NET is different. I can share our case to give you...

https://connect.mayoclinic.org/comment/952987/

Discussion: Liver Transplant to Treat NETs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 24, 2023

She has a well-differentiated grade 3 PNET that metastases to the liver. There were quite a...

https://connect.mayoclinic.org/comment/934866/

Discussion: Carcinoid syndrome; NET not found

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 23, 2023

I did not tolerate well the milk shakes, probably due to milk, but also cacao is...

https://connect.mayoclinic.org/comment/919089/

Discussion: First Lanreotide Injection: Any tips about diet and side effects?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 26, 2023

Does the nausea start with the “CAP” portion or only with the “TEM”? His doctor has...

https://connect.mayoclinic.org/comment/884044/

Discussion: Looking for information on CAPTEM treatment

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 24, 2023

I had pancreatic surgery in February. Have metastases in liver. Just had my first Lanreotide injection...

https://connect.mayoclinic.org/comment/826603/

Discussion: Lanreotide Manufacturers: anyone have experience with either?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 15, 2023

I also have tumor metastases on my spine and ribs, unknown primary. Diagnosed Jan 2020, multiple...

https://connect.mayoclinic.org/comment/810800/

Discussion: Anyone have a neuroendocrine tumor (NET) in the spine?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 13, 2023

Hello @sandy23 I'm just now catching up on your posts that started on October 7. I...

https://connect.mayoclinic.org/comment/762504/

Discussion: Prognosis for Metastasized NET

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 18, 2022

Have your doctors discussed having Lutathera treatment? My husband has Stage 4 NET that started in...

https://connect.mayoclinic.org/comment/1505529/

Discussion: What helps with muscle aches and weakness after Lanreotide injections?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 14 10:49am

PNET found last January, had 5cm tumor removed last April along with the body an tail...

https://connect.mayoclinic.org/comment/1497631/

Discussion: Neuroendocrine Tumor - no treatment plan method

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 3 9:53pm

Hello @perryleeoneal and welcome to the NETs support group on Mayo Connect. I appreciate you sharing...

https://connect.mayoclinic.org/comment/1312862/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 25, 2025

Is the Joe Tippens protocol for neuroendocrine cancer? It looked like it was for pancreatic cancer.....

https://connect.mayoclinic.org/comment/1289433/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 25, 2025

I have pancreatic NET , grade 2, stage 4 with liver metastases. Had debulking surgery on...

https://connect.mayoclinic.org/comment/1286484/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 21, 2025

Cancer: Managing Symptoms

5797

7 minutes ago

Digestive Health

18633

15 minutes ago

Melanoma & Skin Cancer

1148

23 minutes ago

Liver Diseases

1284

2 hours ago

Breast Cancer

8341

2 hours ago