Neuroendocrine Tumors (NETs) Support Group

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You may find this recent study helpful: https://pubmed.ncbi.nlm.nih.gov/36260828/ My wife has a large grade 2 pancreatic...

https://connect.mayoclinic.org/comment/933065/

Discussion: Diagnosed with Stage 4 pNET: What should I know?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 20, 2023

@sturns Are the numerous tumors in your liver and lymph glands related to the pituitary tumor?...

https://connect.mayoclinic.org/comment/780276/

Discussion: Pituitary tumor symptoms: joint, muscle and body aches

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 2, 2022

Thanks! A normal life! That's great! Your CT was negative with tumors in SI causing a...

https://connect.mayoclinic.org/comment/1260147/

Discussion: Diagnosing small bowel NETs with carcinoid syndrome

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 17 9:10am

My husband has a neuroendocrine tumor in the small intestine found by accident as they were...

https://connect.mayoclinic.org/comment/1272924/

Discussion: Anyone have a neuroendocrine tumor in small intestine?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 2 8:33pm

Hello @bluedane Thank you so much for your input! They never did biopsy from her lung,...

https://connect.mayoclinic.org/comment/826555/

Discussion: NET lung with Liver Metastasis (stage 4)

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 15, 2023

The liver is where it has started; as a result of a scan and a biopsy....

https://connect.mayoclinic.org/comment/267669/

Discussion: Newly diagnosed with NET in liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 6, 2019

Hi there Vinnie, I was recently diagnosed with the same, metastasized to liver. Did you have...

https://connect.mayoclinic.org/comment/903584/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 28, 2023

I have been on Lanreotide injections since March 2023. I have Stage 4 pNET with liver...

https://connect.mayoclinic.org/comment/899254/

Discussion: First Lanreotide Injection: Any tips about diet and side effects?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 20, 2023

Thank you for your post. I have small bowel primary NETs with liver met only diagnosed...

https://connect.mayoclinic.org/comment/786233/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 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

I also have pnets on the tail end of my pancreas and liver I'm stage 4,,...

https://connect.mayoclinic.org/comment/801955/

Discussion: Just diagnosed with pancreatic NET stage 1

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 26, 2023

MRI’s are net specialists choice to monitor the liver tumors. They’re visualized much better than CT...

https://connect.mayoclinic.org/comment/1213560/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 15 9:40am

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: 1 day ago

I also was 48 when first diagnosed with NETs. My primary care Dr. totally missed the...

https://connect.mayoclinic.org/comment/277071/

Discussion: I am not ok with this at all

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 30, 2019

A convincing announcement and animation of Histotripsy and liver cancer at the Univ of Chigo online....

https://connect.mayoclinic.org/comment/1023927/

Discussion: Anyone heard about Histotripsy for liver NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 27, 2024

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 7:38pm

I was diagnosed with Metastatic P-NET VIPoma in 2019. I had surgery to remove a part...

https://connect.mayoclinic.org/comment/791950/

Discussion: NET-VIPoma pancreatic tumors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 3, 2023

Diagnosed with NELM 2017 with unknown primary, well differentiated grade 2 in liver and abdominal area....

https://connect.mayoclinic.org/comment/998435/

Discussion: Statistics on progression free survival while on SSA / Lanreotide

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 16, 2024

Diazoxide is only med prescribed to help hypoglycemia caused by endocrine tumors. If cornstarch worked they...

https://connect.mayoclinic.org/comment/934254/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 22, 2023

Hi Sandi You are a blessed person 19 year. Wow!!!! I was on lanreotide and had...

https://connect.mayoclinic.org/comment/746905/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 8, 2022

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