Neuroendocrine Tumors (NETs) Support Group

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Is there a NET team anyone can recommend? I had a right upper lobe lobectomy in...

https://connect.mayoclinic.org/comment/794019/

Discussion: NET (Lung + liver metastatis) Radical nephrectomy done for RCC

Support Group: Kidney Cancer

Posted: Jan 8, 2023

I too have grade 2 NET liver metastasis but there was no mention of necrosis. Sorry...

https://connect.mayoclinic.org/comment/1062149/

Discussion: pNET with liver metastases: What is necrosis?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 4, 2024

MRI every 3 months w/ and w/o contrast substance. I've been told safer and better for...

https://connect.mayoclinic.org/comment/1207619/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 9, 2025

My large tumor is in the liver. Anyone know of how that size located there is...

https://connect.mayoclinic.org/comment/1203264/

Discussion: Living with Neuroendocrine NETS, any advice?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 3, 2025

@marct First of all, I can only tell our story which is very similar. My wife...

https://connect.mayoclinic.org/comment/992359/

Discussion: Diagnosed with Stage 4 pancreatic neuroendocrine metastasized to liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 6, 2024

Hello Karen, @immmm Understanding the difference between lesions, cystic lesions, liver metastasis and tumors can be...

https://connect.mayoclinic.org/comment/167649/

Discussion: Lesions, Cystic liver mets, vs Tumors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 17, 2017

Thank you everyone for your support I will be getting the liver embolization tomorrow I opted...

https://connect.mayoclinic.org/comment/795493/

Discussion: Bland embolization or transarterial chemoembolization (TACE)

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 11, 2023

To answer your question, yes if it spreads (metastasized) I have it in my liver, mesentery,...

https://connect.mayoclinic.org/comment/1238682/

Discussion: Diagnosed with NET si-NET Stage 1 Grade 1

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 16, 2025

I also have NET’s in my liver, I am on monthly octreotide injections. I have not...

https://connect.mayoclinic.org/comment/883630/

Discussion: Anyone have swelling with liver metastases?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 23, 2023

I'm stage 4 pancreatic and liver cancer, tail end pnets I've had no surgeries,radiation very little...

https://connect.mayoclinic.org/comment/803506/

Discussion: Just diagnosed with pancreatic NET stage 1

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 29, 2023

@nofire right now I am not receiving any form of treatment but monitoring of lesions on...

https://connect.mayoclinic.org/comment/1433221/

Discussion: S4, G2 NETS in mesentery. Declined Exploratory Surgery

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 7, 2025

Here is another post about it. - Has anyone out there tried Histotripsy for tumors in...

https://connect.mayoclinic.org/comment/1192134/

Discussion: I recently learned of histotripsy treatment for metastatic NETs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 17, 2024

Yeah I had a second opinion at MD Anderson in Houston and they said I wouldn’t...

https://connect.mayoclinic.org/comment/1338817/

Discussion: Liver transplant and Neuroendocrine Carcinoma

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 30, 2025

They did not do a CA-19 test after surgery. And when I went to see my...

https://connect.mayoclinic.org/comment/1227405/

Discussion: Pancreatic Cancer: Anyone have liver metastasis after Whipple?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 2, 2025

Thank you for your response and treatment info. It seems a good thing that you have...

https://connect.mayoclinic.org/comment/814505/

Discussion: Lost with no confirmation of NETs origin: Innumerable liver lesions

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 20, 2023

Hi @ahtaylor Good to hear that your liver panels have been normal, that seems to be...

https://connect.mayoclinic.org/comment/829501/

Discussion: Recurrence in Liver after Whipple

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 21, 2023

@worriedlovingwife When they say stage 4 terminal, does that definitely mean there is no hope of...

https://connect.mayoclinic.org/comment/292371/

Discussion: Multiple Endocrine Neoplasia 1 (MEN1): What treatments have you had?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 12, 2020

I have stage 4 NET pancreatitis to liver cancer. Also had trouble with sugar levels dropping...

https://connect.mayoclinic.org/comment/934290/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 22, 2023

Interesting. I too am at Mayo JAX. I wonder why you are being treated for your...

https://connect.mayoclinic.org/comment/831958/

Discussion: Anyone treated for NETs at Mayo Clinic in Jacksonville, FL

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 25, 2023

Dr was unable to get a clear view with the CT so he ordered a GA68...

https://connect.mayoclinic.org/comment/1308050/

Discussion: Primary Small Bowel NETS, Liver Mets

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 19, 2025

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