Neuroendocrine Tumors (NETs) Support Group

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Hello @hollywood817 and welcome to the NETs discussion group on Mayo Connect. I see from your...

https://connect.mayoclinic.org/comment/804933/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 1, 2023

Hi, Surgery, July 2022, was at Hartford Hospital in Connecticut. There was no spread of disease...

https://connect.mayoclinic.org/comment/953818/

Discussion: Anyone have a small pancreatic IPMN cyst that turned out to be cancer?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 25, 2023

Wow that is good news for you. I have a similar yet different situation. Merkel showed...

https://connect.mayoclinic.org/comment/1034000/

Discussion: Merkel cancer update

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 15, 2024

https://www.mayoclinic.org/medical-professionals/endocrinology/news/hypoglycemia-role-for-the-selective-arterial-calcium-stimulation-test/mac-20439062 Good luck with all of your testing! Above is an article from Mayo that was...

https://connect.mayoclinic.org/comment/891421/

Discussion: NET - Insulinoma

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 7, 2023

Hello folks, currently being treated at City Of Hope. 10 cm tumor incidentally found on GI...

https://connect.mayoclinic.org/comment/808685/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 9, 2023

Hi Teresa, We did a PET scan within the first month of discovering the tumors. It...

https://connect.mayoclinic.org/comment/804496/

Discussion: Straight to the liver: Anyone have NETs originating in strange areas?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 31, 2023

Hello @avawein I appreciate knowing the date of your surgery. I will be thinking (and praying)...

https://connect.mayoclinic.org/comment/636588/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 18, 2021

Sorry to hear of your condition. If you only have 1 tumor on your liver you...

https://connect.mayoclinic.org/comment/805950/

Discussion: What's the best way to detect liver metastases?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 3, 2023

I was diagnosed in 2003 with an unknown primary (still not found) and tumors in my...

https://connect.mayoclinic.org/comment/762517/

Discussion: Treatments for Carcinoids

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 18, 2022

Welcome and thanks, Margaret for the questions! To respond to your questions: My PET/CTs have been...

https://connect.mayoclinic.org/comment/807203/

Discussion: Pancreatic NETs: Looking to connect with anyone with insulinoma

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 6, 2023

My husband on 1/22/2022 was diagnosed 3 mm carcinoid tumor in his small intestines. We found...

https://connect.mayoclinic.org/comment/1003703/

Discussion: NET in illeum, surgery or proper nutrition?!

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 25, 2024

When I was diagnosed that my NET had come back 2 1/2 years after my liver...

https://connect.mayoclinic.org/comment/822159/

Discussion: Stage 4 Carcinoid tumor: What treatments have you had?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 7, 2023

Hi Bob and Welcome! I read your other post regarding your insulinoma metastasis to the liver....

https://connect.mayoclinic.org/comment/806558/

Discussion: Pancreatic NETs: Looking to connect with anyone with insulinoma

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 5, 2023

So relieved to find people with this frustrating disease process. I was beginning to think I...

https://connect.mayoclinic.org/comment/135496/

Discussion: The role of Tumor Marker Labs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 2, 2017

Okay this is where we are at now. My husband found out December 5th about his...

https://connect.mayoclinic.org/comment/1246998/

Discussion: Anyone have experience with cabozantinib (Cabometyx)?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 28 1:14am

@margaret12 I had fatigue and stomach issues (cramping and diarrhea) off and on beginning in August....

https://connect.mayoclinic.org/comment/812472/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 16, 2023

I also have Grade 2, KI - 67 of 6.6% Stage 4, metastasized from small intestines...

https://connect.mayoclinic.org/comment/1261758/

Discussion: Liver function (birirubin, globulin, glucose, iron) and Octreotide

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 19 9:25am

Good morning, I am in a similar category of diagnosis. My lung tumor metastasis is now...

https://connect.mayoclinic.org/comment/1265413/

Discussion: Grade 3, poorly differentiated duodenal NET metastasized to liver-

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 24 7:05am

Hi rockchick. Congrats on your successful surgery. I can understand that you are scanned out. I...

https://connect.mayoclinic.org/comment/813394/

Discussion: Scared - Suspected NET on tail of the pancreas

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 18, 2023

I am one of Colleen's tagged names. We all been where you are, I can only...

https://connect.mayoclinic.org/comment/1276724/

Discussion: Just diagnosed with PNET: Any thoughts on watch & wait approach?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 7 9:14pm

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