Neuroendocrine Tumors (NETs) Support Group

Public Support Group

Follow for updates

Search discussions

Start a new discussion

756 total results

Comments (689)

Thank you so much for replying I will be starting on 5 mg If that doesn’t...

https://connect.mayoclinic.org/comment/943351/

Discussion: Interested in hearing people's experiences with PRRT

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 6, 2023

I have a small just discovered carcinoid tumor on my mesentery, considered in operable would you...

https://connect.mayoclinic.org/comment/1313187/

Discussion: PRRT side effects and results

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 26, 2025

Hello @sophiarose You posted about a week ago about the swelling in your arm following your...

https://connect.mayoclinic.org/comment/1159633/

Discussion: PRRT side effects and results

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 19, 2024

Hi dbamos1945 I am waiting to take the clinical trial for the Alpha PRRT - it...

https://connect.mayoclinic.org/comment/1410508/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 7, 2025

My Journey of what I have done Liver resection Lanreotide Octreotide Liver embolizations both sides Afinitor...

https://connect.mayoclinic.org/comment/1328140/

Discussion: First scan after 3 months of lanreotidec

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 16, 2025

How long do you have to stay at hospital after the PRRT i am going to...

https://connect.mayoclinic.org/comment/1433767/

Discussion: PRRT Question

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 8, 2025

Thank you. I’m curious if you had surgery to remove the liver Mets and the primary...

https://connect.mayoclinic.org/comment/1232879/

Discussion: Lanreotide Question: Why start before the next scan?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 9, 2025

While on the PRRT my tumors responded well to the treatment plan. Unfortunately several months later...

https://connect.mayoclinic.org/comment/613118/

Discussion: Interested in hearing people's experiences with PRRT

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 1, 2021

I just had my first shot of the PRRT at the same day/time of Dr. Strosberg's...

https://connect.mayoclinic.org/comment/997550/

Discussion: Update: Lutethera treatment is over

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 15, 2024

I had surgery in 2018 for spine nets at T-10. Since then I have numerous spine...

https://connect.mayoclinic.org/comment/947808/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 14, 2023

My husband started with emboliztion but I have read that PRRT is being considered as a...

https://connect.mayoclinic.org/comment/1087600/

Discussion: Pancreatic NETs: Looking to connect with anyone with insulinoma

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 16, 2024

The explanation I got, is once you are stage 4, targeted therapies such as surgery and...

https://connect.mayoclinic.org/comment/1487483/

Discussion: Tips about preparing for my second opinion appointment at Mayo

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 20 3:25pm

Hello @markmark007 Did your wife begin the PRRT therapy this month? I hope she is doing...

https://connect.mayoclinic.org/comment/832010/

Discussion: PRRT for those with Incontinence Issues

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 25, 2023

Hello @lindaamos, I just received a notification about a podcast about PRRT treatments that you might...

https://connect.mayoclinic.org/comment/995792/

Discussion: Update: Lutethera treatment is over

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 11, 2024

My PRRT was through 2 IV lines as well. Worked great. Im curious why the PICC...

https://connect.mayoclinic.org/comment/1371120/

Discussion: PRRT Question

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 15, 2025

Given a choice, I would choose the least invasive/time consuming procedure that was effective! I’d do...

https://connect.mayoclinic.org/comment/1365369/

Discussion: Interested in your experience with treatments of PRRT vs surgery

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 6, 2025

Thanks, @kjskjstein . It really helps to hear from patients. I would love to hear from...

https://connect.mayoclinic.org/comment/767345/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 30, 2022

@tgsenn70 My wife had 3 cycles of PRRT that turned out very good for her with...

https://connect.mayoclinic.org/comment/1415669/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 14, 2025

@hollywood817: Thank you for sharing the info on your clinical study. I am just a patient...

https://connect.mayoclinic.org/comment/1207599/

Discussion: Living with Neuroendocrine NETS, any advice?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 9, 2025

@jayace2430 I sincerely hope your wife’s meeting went well? Those early meetings were a little overwhelming...

https://connect.mayoclinic.org/comment/1529597/

Discussion: Interested in hearing people's experiences with PRRT

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 18 7:23am

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