Neuroendocrine Tumors (NETs) Support Group

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Comments (653)

Are you getting monthly injections? I started with Lanreotide, that didn’t help the flushing, I was...

https://connect.mayoclinic.org/comment/1208804/

Discussion: I am one year out with my diagnosis just finished 4th round of PRRT

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 11, 2025

I was diagnosed 2 years ago, with stage 4 ,started in my lower intestines and metastasized...

https://connect.mayoclinic.org/comment/1202170/

Discussion: Living with Neuroendocrine NETS, any advice?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 2, 2025

Definitely identify with the private moments of emotions. My wife is a natural born worrier.. She...

https://connect.mayoclinic.org/comment/1192097/

Discussion: Living with Neuroendocrine NETS, any advice?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 17, 2024

I was diagnosed with Grade2 Stage IV metastasized from small intestines to liver. PET scan validated...

https://connect.mayoclinic.org/comment/1162526/

Discussion: NET on liver: Question about treatments when no symptoms

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 25, 2024

I was diagnosed with NETs in the liver December 2022, Had a PET scan to determine...

https://connect.mayoclinic.org/comment/1147007/

Discussion: After initial tests/consults at Mayo: When does NETs treatment start?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 25, 2024

I was diagnosed with stage 4 advanced NET s primary in the small bowels, and metastasized...

https://connect.mayoclinic.org/comment/1112552/

Discussion: GI Net stage 4 advanced: Is it incurable?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 27, 2024

Yes, to the point I am surprised I don't glow. :) I have had multiple Pituitary...

https://connect.mayoclinic.org/comment/186233/

Discussion: Multiple abnormal hormone levels - Could it be autoimmune related?

Support Group: Autoimmune Diseases

Posted: Feb 24, 2018

@gaylejean That is an interesting approach, thanks for sharing your doctor's opinion. It might still be...

https://connect.mayoclinic.org/comment/137548/

Discussion: My Husband was newly diagnosed with Carcinoid Cancer

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 31, 2017

Thanks! @hopeful33250 those articles are helpful! I’m a caregiver. My mom was diagnosed with NETs (Primary...

https://connect.mayoclinic.org/comment/311779/

Discussion: Afinitor - Anyone have pneumonitis as a side effect?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 22, 2020

I was diagnosed Dec. 2021 Tumors started in the small intestines and metastasized to the liver...

https://connect.mayoclinic.org/comment/1035643/

Discussion: What questions should I ask oncologist tumor types and chemo treatment

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 18, 2024

The carcinoid heart disease caused a lot of swelling to the point it was putting pressure...

https://connect.mayoclinic.org/comment/911346/

Discussion: Has anyone had NETs metastasized to heart?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 11, 2023

Hi I’ve been living with carcinoid tumor now since 2011 when I first learned I had...

https://connect.mayoclinic.org/comment/747582/

Discussion: Treatments for Carcinoids

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 9, 2022

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

I haven’t been on to update as it seems like we got to the mountain but...

https://connect.mayoclinic.org/comment/1444451/

Discussion: Son, 48 diagnosed with PNET pancreatic cancer 8cm tail & spleen

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 21, 2025

I have NET’s I was originally diagnosed with poorly differentiated and had surgery to have it...

https://connect.mayoclinic.org/comment/1418269/

Discussion: Have Octreotide shots helped you?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 18, 2025

I also was diagnosed stage 4 primary in the small intestine and spread to the liver...

https://connect.mayoclinic.org/comment/1391349/

Discussion: Has anyone been diagnosed with neuroendocrine carcinoma?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 11, 2025

I started Lanreotide February 2023, didn’t stop the hot flashes (carcinoid syndrome). Dr switched me to...

https://connect.mayoclinic.org/comment/1289422/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 25, 2025

I was diagnosed with NET’s starting in small bowel and metastasized to liver, I’ve been on...

https://connect.mayoclinic.org/comment/1283550/

Discussion: NET in jejunum spread to liver: Treatment options?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 16, 2025

I was diagnosed type 2 diabetes 2 years ago when I was diagnosed with carcinoid syndrome.....

https://connect.mayoclinic.org/comment/1233965/

Discussion: Anyone dealing with Carcinoid NETs with Diabetes?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 10, 2025

They call the disease Zebras because no 2 are the same I never had a hot...

https://connect.mayoclinic.org/comment/1196548/

Discussion: What does my dentist need to know about my NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 24, 2024

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