Neuroendocrine Tumors (NETs) Support Group

Public Support Group

Follow for updates

Search discussions

Start a new discussion

756 total results

Comments (689)

@isaiah5417nt, when I had a blockage in my small intestine in 2018, they also found one...

https://connect.mayoclinic.org/comment/835728/

Discussion: Anyone have a stomach NET?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 1, 2023

@markmark007 Thank you for your prompt reply. Wonder if PRRT is the first treatment option prescribed...

https://connect.mayoclinic.org/comment/968905/

Discussion: Octreotide Injections - Skipping One or More?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 22, 2023

@markmark007 I did 4 rounds of PRRT last year I am currently stable for 1 year...

https://connect.mayoclinic.org/comment/1451219/

Discussion: Anyone had positive results from Lanreotide injections?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 2, 2025

@dbamos1945 Thanks for sharing. Great to hear PRRT was working for you it is likley my...

https://connect.mayoclinic.org/comment/1425169/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 28, 2025

Yes. I have had 4 treatments of PRRT. I get a quarterly infusion of Zometa. This...

https://connect.mayoclinic.org/comment/1142795/

Discussion: PRRT side effects and results

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 17, 2024

What a great report, @dbamos1945! I appreciate you sharing your journey with NETs. So that our...

https://connect.mayoclinic.org/comment/1218177/

Discussion: MRI or CatScan as follow up imaging for metastatic liver tumor?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 21, 2025

I really appreciate your in-depth explanation. I had not heard of SBRT. It is good to...

https://connect.mayoclinic.org/comment/1542744/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: 4 days ago

I don't think I was ever told not to take Vitamin C while on PRRT. Wasn't...

https://connect.mayoclinic.org/comment/1379729/

Discussion: Lutathera and vitamin C

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 26, 2025

My wife completed 4 cycles of PRRT with not many issues. She did feel sluggish and...

https://connect.mayoclinic.org/comment/1109200/

Discussion: PRRT side effects and results

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 21, 2024

@phyllisden Glad to know the combination of PRRT with Octreotide have produced stable result for you....

https://connect.mayoclinic.org/comment/1060680/

Discussion: Questions Regarding Results after PRRT Treatment

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 2, 2024

I'm exactly your age and my situation appears to be exactly like yours. But my journey...

https://connect.mayoclinic.org/comment/941331/

Discussion: 4 treatment options from my doctor, which one should I start with?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 3, 2023

The oncologist does not think missing one injection will be detrimental. Injections are a part of...

https://connect.mayoclinic.org/comment/967260/

Discussion: Octreotide Injections - Skipping One or More?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 18, 2023

Glad to learn you pursued PRRT Lutathera treatment series. Others have thought it wasn’t working, only...

https://connect.mayoclinic.org/comment/1149265/

Discussion: Straight to the liver: Anyone have NETs originating in strange areas?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 29, 2024

Hello @kurtjazzy01 and welcome to Connect. I see from your post that you had surgery 18...

https://connect.mayoclinic.org/comment/1403748/

Discussion: So, now just still waiting, losing my mind being worried and new quest

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 28, 2025

@ricki8 thank you so much for your response, still learning how to live between tests. But...

https://connect.mayoclinic.org/comment/1419279/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 20, 2025

Have her doctors offered PRRT? Sorry! I hope they will find something that will work for...

https://connect.mayoclinic.org/comment/1039116/

Discussion: Anyone have experience with "functioning" Pancreatic NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 23, 2024

@gulzar Thanks for your posting about your NET disorder. Are you having any symptoms at this...

https://connect.mayoclinic.org/comment/90146/

Discussion: I have recently been diagnosed with my third neuroendocrine tumor

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 1, 2016

I don’t know if all my issues are related to PRRT but sure is coincidental. I’m...

https://connect.mayoclinic.org/comment/729334/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 22, 2022

Hello @klpetts and welcome to Mayo Connect. I can understand your wanting to hear from others...

https://connect.mayoclinic.org/comment/257016/

Discussion: Interested in hearing people's experiences with PRRT

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 19, 2020

Congrats, that is great news! I’m waiting on a consultation appointment to start PRRT/Lutathera treatments. Feeling...

https://connect.mayoclinic.org/comment/1339169/

Discussion: PRRT side effects and results

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 1, 2025

Follow

8129

35 minutes ago

Digestive Health

Follow

18210

56 minutes ago

Cancer: Managing Symptoms

Follow

5608

1 hour ago

Pancreatic Cancer

Follow

3542

1 hour ago

Follow

1107

2 hours ago