Neuroendocrine Tumors (NETs) Support Group

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Comments (224)

Thank you for moving my post ! And for sure I will continue to share! Because...

https://connect.mayoclinic.org/comment/827678/

Discussion: Newly diagnosed-Primary Malignant Neuroendocrine of Lung

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 17, 2023

Hi Larenn, May I ask how large your lung tumor and subcutaneous nodule were? I have...

https://connect.mayoclinic.org/comment/825153/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 12, 2023

Hello @jimmiel3 and welcome to Mayo Clinic Connect. I can certainly understand your concern about the...

https://connect.mayoclinic.org/comment/821937/

Discussion: Chromogranin A test via Quest: symptoms of NETs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 6, 2023

Hello @rice099 and welcome to the NETs discussion on Mayo Clinic Connect. I have moved your...

https://connect.mayoclinic.org/comment/815117/

Discussion: Carcinoid tumor of the appendix.PET scan results

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 21, 2023

@sanjaykumar1 I can certainly understand your concern about the significant rise in the CgA levels, especially...

https://connect.mayoclinic.org/comment/807499/

Discussion: What topics do you want for the Neuroendocrine Support Group?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 7, 2023

Welcome @ttdonnelly. I moved your message to this existing discussion: - High or Fluctuating Chromogranin A...

https://connect.mayoclinic.org/comment/803094/

Discussion: High or Fluctuating Chromogranin A Level: What does it mean?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 28, 2023

Hi, My name is Penny. My wife, Cindy, had surgery on December 6 in which they...

https://connect.mayoclinic.org/comment/797408/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 16, 2023

There are several questions on our site referring to the ChrimograninA blood test and what it...

https://connect.mayoclinic.org/comment/793189/

Discussion: Neuroendocrine tumor: What tests are used for diagnosis?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 6, 2023

When you say very high? What was your test result. My first Chromogranin A test result...

https://connect.mayoclinic.org/comment/792833/

Discussion: Neuroendocrine tumor: What tests are used for diagnosis?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 5, 2023

Bette: Many thanks - your input is sincerely appreciated Sharon will have another blood draw today...

https://connect.mayoclinic.org/comment/792528/

Discussion: Lanreotide Manufacturers: anyone have experience with either?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 5, 2023

Welcome, @casualsuman. Chromogranin A (CgA) is a reliable serum diagnostic biomarker for pancreatic neuroendocrine tumors. @thebobk,...

https://connect.mayoclinic.org/comment/760610/

Discussion: High or Fluctuating Chromogranin A Level: What does it mean?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 13, 2022

Nah, I don't Btw here chromogranin means Cga A test

https://connect.mayoclinic.org/comment/760449/

Discussion: High or Fluctuating Chromogranin A Level: What does it mean?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 13, 2022

My father chromogranin is 3300, After the surgery of pancreatic tumor It's been nearly 6 months...

https://connect.mayoclinic.org/comment/760419/

Discussion: High or Fluctuating Chromogranin A Level: What does it mean?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 12, 2022

Hello @markmark007 I appreciate the additional information about Sharon's history with NETs. It sounds like she...

https://connect.mayoclinic.org/comment/745039/

Discussion: Recommendation for Seattle Cancer Care Alliance MDs Treating NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 3, 2022

Yes. I am seeing a homeopathic doctor still. Detoxification of my GI Organs; as well as...

https://connect.mayoclinic.org/comment/643477/

Discussion: High or Fluctuating Chromogranin A Level: What does it mean?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 8, 2021

Good Morning. I recently had a (68)Ga-DOTATATE PET/CT because of a very high Chromogranin A level-1600....

https://connect.mayoclinic.org/comment/624305/

Discussion: High or Fluctuating Chromogranin A Level: What does it mean?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 8, 2021

I’ve had test after test for vague symptoms of profound fatigue, trouble swallowing, weight loss, and...

https://connect.mayoclinic.org/comment/277060/

Discussion: I am not ok with this at all

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 24, 2019

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

Yes, I have had 3 different upper GI's, as well as a colonoscopy. They were all...

https://connect.mayoclinic.org/comment/186247/

Discussion: Multiple abnormal hormone levels - Could it be autoimmune related?

Support Group: Autoimmune Diseases

Posted: Feb 26, 2018

Has anyone heard anything about ISI labs possibly having a lot of false positives with their...

https://connect.mayoclinic.org/comment/102026/

Discussion: Carcinoid cancer: Want to meet others

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 12, 2017

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