Neuroendocrine Tumors (NETs) Support Group | Page 5

@augustine777 Many of us, myself included, had NETs that were found incidentally (during a test that...

https://connect.mayoclinic.org/comment/842616/

Discussion: Has anyone chosen the Watch and Wait and regretted that choice?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 13, 2023

Hi I ended up with a partial gastrectomy in 2019. I had two primary pancreatic NETs...

https://connect.mayoclinic.org/comment/840931/

Discussion: Anyone have a partial gastrectomy to remove a NET?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 10, 2023

@bnjncrew, I'd like to add my welcome. I augmented the title of your discussion to reflect...

https://connect.mayoclinic.org/comment/831812/

Discussion: Neuroendocrine Insulinoma: Is treatment different for this type?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 25, 2023

I have pancreatic NETS that have spread to my liver. I was diagnosed in August. I...

https://connect.mayoclinic.org/comment/818762/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 28, 2023

Hello I all just joined. I have just been diagnosed with a stage 3 slow growing...

https://connect.mayoclinic.org/comment/817654/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 26, 2023

Hello @meleelee1 and welcome to the NETs discussion on Mayo Clinic Connect. I'm glad that you...

https://connect.mayoclinic.org/comment/815190/

Discussion: Cough ! What could it be?!

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 21, 2023

I'm new to this group, I have a very small net on the tail of my...

https://connect.mayoclinic.org/comment/815130/

Discussion: Cough ! What could it be?!

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 21, 2023

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

https://connect.mayoclinic.org/comment/804853/

Discussion: Gynecologic neuroendocrine metastasized to lungs: Need a specialist

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 1, 2023

Thankyou for your update. I hope to go 10 years without surgery because my NET which...

https://connect.mayoclinic.org/comment/774651/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 18, 2022

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

This was very interesting. My SIL has NET in liver (started in pancreas). She is doctoring...

https://connect.mayoclinic.org/comment/761053/

Discussion: Neuroendocrine Carcinoma with Liver Metastasis

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 14, 2022

Hello @sgilbert I would like to join Amanda, @amandajro in welcoming you to Mayo Clinic Connect....

https://connect.mayoclinic.org/comment/682742/

Discussion: High CEA, High Pancreastatin, High Calcitonin, High ChA

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 20, 2022

@aprils1957 I currently have a 4cm pancreatic NET that has spread primarily to my liver and...

https://connect.mayoclinic.org/comment/1524643/

Discussion: Previous heart surgery & risks of surgery to remove lung net

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 11 11:47am

@hopeful33250 Thanks for the resource links. My brother’s NETS cancer has metastasized all over his body,...

https://connect.mayoclinic.org/comment/1524156/

Discussion: Anyone taking Cabometyx?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 10 4:43pm

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

@amongst I still get the gallium dotatate PET to monitor my NETs. My primary is in...

https://connect.mayoclinic.org/comment/1498883/

Discussion: I saw the surgeon. More confused than ever.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 5 3:42pm

@ceefer What if the tumor on the pancreas is contributing to your diabetes? When I was...

https://connect.mayoclinic.org/comment/1498619/

Discussion: Neuroendocrine Tumor - no treatment plan method

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 5 10:11am

Functional well differentiated grade 3 pancreatic NET. Folfox got me out of hospital at least and...

https://connect.mayoclinic.org/comment/1497067/

Discussion: Anyone have experience with cabozantinib (Cabometyx)?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 3 9:28am

@jameshoch Hi and welcome to Mayo Connect. Similar to @vinnie694, I was diagnosed with stage 4...

https://connect.mayoclinic.org/comment/1476419/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 7 8:23am

That really does sound frustrating! I can't imagine having to undergo tests for a year and...

https://connect.mayoclinic.org/comment/1459090/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 12, 2025