Neuroendocrine Tumors (NETs) Support Group

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Comments (2,332)

Sorry for the delay in responding but I had hernia repair surgery and still have nausea,...

https://connect.mayoclinic.org/comment/705196/

Discussion: Any NET patients from NYC

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 4, 2022

General question...have NETS. I'm both lungs. The GA-68 Pet/scan. Reference my liver SUV. # was very...

https://connect.mayoclinic.org/comment/1054473/

Discussion: NET not found on PET/CT

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 20, 2024

I am wondering where your tumors are Liver?

https://connect.mayoclinic.org/comment/1289836/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 25, 2025

Interesting! I have several in my liver also.

https://connect.mayoclinic.org/comment/1462249/

Discussion: Primary Small Bowel NETS, Liver Mets

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 16, 2025

I had the same and it spread to my lymph nodes and liver

https://connect.mayoclinic.org/comment/1216778/

Discussion: PNET removed 2 years ago: Can it come back at another site?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 19, 2025

My tumor was in the tail of pancreas, entangled with spleen. With liver mets

https://connect.mayoclinic.org/comment/972425/

Discussion: Anyone had nauseous, gas burping as symptoms for NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 29, 2023

Hi mama neuroendocrine, it sound like you’re on a similar path of hope in managing this...

https://connect.mayoclinic.org/comment/953639/

Discussion: Metastatic NeuroEndocrine Grade 3 - ki 80% -

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 25, 2023

Hi @mkmn, I'd like to add my welcome and am tagging fellow @pjsheridan2022 @immmm @gulzar as...

https://connect.mayoclinic.org/comment/732809/

Discussion: NETs: Anyone has Liver debulking for liver metastasis?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 31, 2022

Hi, I am going thru my second surgery for Bland Liver Embolization tomorrow (they do one...

https://connect.mayoclinic.org/comment/768039/

Discussion: NETs: Anyone has Liver debulking for liver metastasis?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 1, 2022

I just realized that I didn't respond to you but some days I am fatigue and...

https://connect.mayoclinic.org/comment/713907/

Discussion: Any NET patients from NYC

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 3, 2022

My liver had so many tumors that they were not counted. After 4 treatments of Lutathera,...

https://connect.mayoclinic.org/comment/1193915/

Discussion: I recently learned of histotripsy treatment for metastatic NETs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 20, 2024

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

My husband was diagnosed with stage four grade 2 NET in October 2022. He had a...

https://connect.mayoclinic.org/comment/1213981/

Discussion: Anyone had a large NET in the liver? What treatment did you have?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 15, 2025

Thank you both for your replies. It sounds like those therapies are working well for both...

https://connect.mayoclinic.org/comment/901213/

Discussion: Should I want more treatment after pancreatic nets with lymph nodes?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 24, 2023

He has never had symptoms of carcinoid syndrome yet so we are hopeful there are no...

https://connect.mayoclinic.org/comment/137533/

Discussion: My Husband was newly diagnosed with Carcinoid Cancer

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 14, 2017

I understand, @amygirl, however, Connect members are not medical professionals, but patients like yourself. The question...

https://connect.mayoclinic.org/comment/1197964/

Discussion: Living with Neuroendocrine NETS, any advice?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 27, 2024

I just finished PRRT for sm. Intestine NET primary w/ liver metastases. I choose 3mo follow-up...

https://connect.mayoclinic.org/comment/1211469/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 14, 2025

Hello @cindypat1 and welcome to the NETs support group on Mayo Connect. We have many members...

https://connect.mayoclinic.org/comment/1203848/

Discussion: Living with Neuroendocrine NETS, any advice?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 4, 2025

@buffalogrammy Hi and welcome to Mayo Connect. What is your diagnosis? Have you had any other...

https://connect.mayoclinic.org/comment/1539558/

Discussion: Has anyone had Y90 treatment for NETS?

Support Group: Neuroendocrine Tumors (NETs)

Posted: 6 days ago

Carcinoid tumors in the liver. Thanks for the information. It gives more confidence.

https://connect.mayoclinic.org/comment/85531/

Discussion: Anyone gone to Mayo Clinic in Rochester Minnesota for carcinoid tumors?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 21, 2015

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