Neuroendocrine Tumors (NETs) Support Group

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Hi Teresa, Dx was in 2009 when I went to the ER with worse headache I...

https://connect.mayoclinic.org/comment/933446/

Discussion: Anyone still have pancreas pain while taking Lanteotide?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 20, 2023

I also have stage 4 Neuroendocrine in the body pancreas along with small spots on my...

https://connect.mayoclinic.org/comment/796911/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 15, 2023

Just take a deep breath. It can be a long process. I have a metastatic Pnet...

https://connect.mayoclinic.org/comment/1290592/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 26, 2025

I have an unknown primary NET maybe intestines It has metastasized to my liver periportal lymph...

https://connect.mayoclinic.org/comment/943430/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 7, 2023

Unfortunately, I was not accepted to the trial study (COMPOSE). In addition to neuroendocrine cancer in...

https://connect.mayoclinic.org/comment/839259/

Discussion: High grade 2 and 3 neuroendocrine

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 7, 2023

@jessie1990 Keep crying then. You probably need it. I was diagnosed with stage 4 pancreatic NETs...

https://connect.mayoclinic.org/comment/1454550/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 6, 2025

I have an injection of 125ml Lanreotide every 4 weeks, to stablise my NET in my...

https://connect.mayoclinic.org/comment/1352421/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 20, 2025

Thanks for answering. My husband was diagnosed because he had an acute pain which took us...

https://connect.mayoclinic.org/comment/1276684/

Discussion: Living with Neuroendocrine NETS, any advice?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 7, 2025

Not sure what type of radiation they want you to have? I had high dose radiation...

https://connect.mayoclinic.org/comment/1244760/

Discussion: DIPNECH diagnosis. Has anyone had radiation?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 24, 2025

I too have an occasional glass of wine or 2 when out for dinner with friends.....

https://connect.mayoclinic.org/comment/1231279/

Discussion: How does Alcohol use affect Liver NET?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 7, 2025

I am recently diagnosed with metastatic neuroendocrine tumors in my liver. No know origin. Grade 2...

https://connect.mayoclinic.org/comment/1171826/

Discussion: New DIPNECH diagnosis, need advice on doctors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 11, 2024

@gismole1: how has your histotripsy treatment been - both in side effects and scan results? Please...

https://connect.mayoclinic.org/comment/1158735/

Discussion: PRRT side effects and results

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 18, 2024

Hello @jhilbish, I'm glad to hear that your husband's liver embolization is over now. Will be...

https://connect.mayoclinic.org/comment/787656/

Discussion: NETs what to eat? What to avoid?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 22, 2022

Interesting. I am on my second cancer - fist lung five years ago, now liver. Now...

https://connect.mayoclinic.org/comment/232728/

Discussion: Facing Cancer Recurrence, PTSD & Acknowledging Mental Health

Support Group: Cancer: Managing Symptoms

Posted: Dec 8, 2018

Hello, my NET is metastasized to my liver from my lung diagnosis in Dec 2022. My...

https://connect.mayoclinic.org/comment/1349514/

Discussion: Carcinoid cancer: Want to meet others

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 16, 2025

Hi Tom, I follow Ronny Allen from the U.K. and he is very helpful. I have...

https://connect.mayoclinic.org/comment/1255078/

Discussion: Living with Neuroendocrine NETS, any advice?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 10, 2025

and the CT that local reading identified a new liver met, but Mayo review of that...

https://connect.mayoclinic.org/comment/1117858/

Discussion: Everolimus for multiple Neuroendocrine tumors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 4, 2024

Hello @siluka and welcome to Mayo Connect. Your concern about the CgA levels and the lesions...

https://connect.mayoclinic.org/comment/1064999/

Discussion: High or Fluctuating Chromogranin A Level: What does it mean?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 9, 2024

61 yr old patient, liver mets after 7 months of whipples. Now under chemo. Not able...

https://connect.mayoclinic.org/comment/1062766/

Discussion: Weight Loss after Whipple: What strategies helped you?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 5, 2024

@momo5512: Take a deep breath for you need to first hear that Neuroendocrine Carcinoid Tumors are...

https://connect.mayoclinic.org/comment/1547388/

Discussion: New to NET

Support Group: Neuroendocrine Tumors (NETs)

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