Neuroendocrine Tumors (NETs) Support Group

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We have a number of members in the NET support group who have discussed their experiences...

https://connect.mayoclinic.org/comment/1146709/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 24 2:06pm

I am Small Intestine primary with Liver metastases… Grade 1; Stage 4. Every person with NET...

https://connect.mayoclinic.org/comment/922667/

Discussion: Just diagnosed with pancreatic NET stage 1

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 1, 2023

@links, do you have inflammation of the liver capsule? Or is it the tumor stretching the...

https://connect.mayoclinic.org/comment/967684/

Discussion: Anyone have stretching of the liver capsule?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 19, 2023

As you likely already know, histotripsy is a recently FDA-approved ultrasound device to treat liver tumors....

https://connect.mayoclinic.org/comment/1139038/

Discussion: Has anyone out there tried Histotripsy for tumors in the liver?

Support Group: Liver Cancer

Posted: Sep 9 4:04pm

I had surgery five years ago for nets in my small intestine which had spread into...

https://connect.mayoclinic.org/comment/217318/

Discussion: Embolization

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 6, 2019

I have my liver ablation this week. I’ll let you know how that goes.

https://connect.mayoclinic.org/comment/1171949/

Discussion: Neuroendocrine Carcinoma with Liver Metastasis

Support Group: Neuroendocrine Tumors (NETs)

Posted: 6 days ago

Well we were surprised at the transplant option, our assumption was we get the NET to...

https://connect.mayoclinic.org/comment/994290/

Discussion: Diagnosed with Stage 4 pancreatic neuroendocrine metastasized to liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 9 9:33am

yes was found in routine blood work with liver values off further testing revealed tumors in...

https://connect.mayoclinic.org/comment/671990/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 18, 2022

Hi, breck from Iowa! I’m from Florida, have NETS in my liver and small intestine.. Welcome!

https://connect.mayoclinic.org/comment/1169290/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 7 5:52am

Oh so sorry for the bad stuff following embolization. Not sure if it is helpful but...

https://connect.mayoclinic.org/comment/828461/

Discussion: Bland embolization or transarterial chemoembolization (TACE)

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 19, 2023

@splendrous, I hope you saw the helpful post from @jlsgt. Sometimes the original source, also known...

https://connect.mayoclinic.org/comment/1161138/

Discussion: Dotatate lights only in liver, but report says metastatic to liver?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 22 3:37pm

So the liver is where the net started or did it start somewhere else and spread...

https://connect.mayoclinic.org/comment/267666/

Discussion: Newly diagnosed with NET in liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 4, 2019

Hi harley4650, sorry to hear that treatment is not working as hoped. In addition to the...

https://connect.mayoclinic.org/comment/1037432/

Discussion: Treatment for GI NET with liver mets not working: Options?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 20 8:42pm

Hello @feebee I found some information about liver embolization at the Carcinoid Foundation website. Here is...

https://connect.mayoclinic.org/comment/217320/

Discussion: Embolization

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 6, 2019

Did anyone here had Copper64 v Gallium68 for liver findings? Did anyone had harmatomas or hemangiomas...

https://connect.mayoclinic.org/comment/748754/

Discussion: Pancreastatin level at 1500

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 12, 2022

@ginnym3, you're in great hands with Dr. Starr and team. You may also be interested in...

https://connect.mayoclinic.org/comment/968149/

Discussion: Any tips about Cytoreductive, debulking Surgery?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 20, 2023

grade 2 k-67 7% Stage 4 neuroendocrine primary in pancreas with inoperable liver tumors on both...

https://connect.mayoclinic.org/comment/1042055/

Discussion: Anyone have experience with "functioning" Pancreatic NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 29 8:37am

Hi @ahtaylor, This is a great question! I had my first surgery for NETs in the...

https://connect.mayoclinic.org/comment/828910/

Discussion: Recurrence in Liver after Whipple

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 20, 2023

Terry998: This is the first time I have found a person willing to talk about Cysts...

https://connect.mayoclinic.org/comment/819547/

Discussion: Lesions, Cystic liver mets, vs Tumors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 1, 2023

Hi Teresa, Thanks for your concern and prayers. Yes, it will be a liver resection. The...

https://connect.mayoclinic.org/comment/637391/

Discussion: Possible NET with No Evidence of Tumor: Mediastinal Mass

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 20, 2021

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