Neuroendocrine Tumors (NETs) Support Group

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Comments (2,365)

Sorry to hear what you are going through! I have stage 4 grade 2 metatastic to...

https://connect.mayoclinic.org/comment/1282937/

Discussion: New To NETS - Stage 4 / Grade 1

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 16, 2025

Hello @beachboyarkansas and welcome to the NETs support group on Mayo Connect. I really appreciate you...

https://connect.mayoclinic.org/comment/1111157/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 24, 2024

I’m sorry you’re going through this. My husband had the same surgery except for the liver...

https://connect.mayoclinic.org/comment/992356/

Discussion: Diagnosed with Stage 4 pancreatic neuroendocrine metastasized to liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 6, 2024

I would also recommend you have both types of petscans done. It took 5 years to...

https://connect.mayoclinic.org/comment/932546/

Discussion: Ways to control hypoglycemia caused by insulinoma in pancreas?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 19, 2023

Hello @bmkelldog! I completely understand your frustration! Diagnosing and then locating insulinomas, due to their small...

https://connect.mayoclinic.org/comment/1339069/

Discussion: NET - Insulinoma

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 1, 2025

Hi - PNet diagnosis in September of ‘20 …. (4) total tumors …. Three in pancreas...

https://connect.mayoclinic.org/comment/1304507/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 15, 2025

We just met up with the oncologist. Actually the same Dr. that had treated a family...

https://connect.mayoclinic.org/comment/1219187/

Discussion: PNETs: What comes first? Surgery or try to shrink tumor with chemo?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 22, 2025

I had y-90 treatment on both sides of my liver. Mapping was done and couple weeks...

https://connect.mayoclinic.org/comment/1174717/

Discussion: Radioembolization Is My Next Step

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 17, 2024

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 mine has spread to my liver spine and ribs I have...

https://connect.mayoclinic.org/comment/980862/

Discussion: Anyone have a neuroendocrine tumor in small intestine?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 15, 2023

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

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

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