Neuroendocrine Tumors (NETs) Support Group

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Comments (46)

Hello @ericnjeffrey and welcome to the NETs support group on Mayo Connect. I am sorry to...

https://connect.mayoclinic.org/comment/1194294/

Discussion: Bloating

Support Group: Neuroendocrine Tumors (NETs)

Posted: 5 days ago

Good luck to you! I have Stage IV carcinoid originally in my ileum, and now in...

https://connect.mayoclinic.org/comment/1150045/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 1 3:57am

I, too, have NET (Ileum), along with several METS. I have been going to Mayo since...

https://connect.mayoclinic.org/comment/134671/

Discussion: NET - Insulinoma

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 2, 2018

Family member recent diagnosis of NETS in ileum, lymph node, and liver. Awaiting removal surgery. First...

https://connect.mayoclinic.org/comment/914810/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 17, 2023

Hello. Thank you for sharing and thank you for the links, I’ll check them out soon....

https://connect.mayoclinic.org/comment/919842/

Discussion: Had CLL since 1996 & Now NETs-Anyone Else?

Support Group: Blood Cancers & Disorders

Posted: Aug 27, 2023

No, I am not getting any treatment currently — just regular CT scans. And I did...

https://connect.mayoclinic.org/comment/825156/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 12, 2023

Thank you! Sorry for my english, I am spanish. Can I ask you how old were...

https://connect.mayoclinic.org/comment/1054503/

Discussion: Laparoscopic Possible Open Surgery Resection - Small Bowel NETS

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 21 2:08am

Yes, I am. I have Stage Four carcinoid cancer. The original site was my ileum. It...

https://connect.mayoclinic.org/comment/988900/

Discussion: Laparoscopic Possible Open Surgery Resection - Small Bowel NETS

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 30, 2023

That's wonderful that the surgery helped you, @siluka. Being able to eat without a lot of...

https://connect.mayoclinic.org/comment/1065174/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 10 5:59am

I have not meet with an oncologist. I got all my medical records an found out...

https://connect.mayoclinic.org/comment/1141342/

Discussion: My Chromogranin numbers are high. What is a more accurate test?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 14 8:14am

I’ll speak to 3 & 4. My wife with NETs (ileum), 50 METS to liver has...

https://connect.mayoclinic.org/comment/134661/

Discussion: NET - Insulinoma

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 25, 2018

Hi. My primary was found in the terminal ileum. Metastasis to nodes, liver, and other organs.i...

https://connect.mayoclinic.org/comment/160176/

Discussion: Carcinoid Cancer of the Liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 25, 2017

Hi, I too have NETs that were discovered in my ileum after being in the ER...

https://connect.mayoclinic.org/comment/777826/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 27, 2022

I also had multiple small lesions in my liver and a few larger ones. I decided...

https://connect.mayoclinic.org/comment/813447/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 18, 2023

i actually feel good since surgery. I have had check up every 6 months since surgery....

https://connect.mayoclinic.org/comment/1065049/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 9 5:52pm

I am a patient of Dr Starr's at Mayo Clinic Jacksonville. My NETS were ileum primary...

https://connect.mayoclinic.org/comment/876912/

Discussion: Where can I find a carcinoid syndrome specialist in Florida?!

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 12, 2023

My husband has much the same type of NET as you. It is grade 1 but...

https://connect.mayoclinic.org/comment/837108/

Discussion: NETs: Scheduled for small intestine resection: What to expect?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 3, 2023

I was first diagnosed with NETs in 2004 so I’ve had LOTS of lab-work done over...

https://connect.mayoclinic.org/comment/889603/

Discussion: NET symptoms despite follow-up lab work ok

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 3, 2023

Hi, I am living in Adelaide. South Australia. I went through chemo with non Hodgkins lymphoma...

https://connect.mayoclinic.org/comment/819077/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 1, 2023

I was diagnosed in 2012 as a typical mid-gut, Ileum primary, liver mets and lymphnode mets...

https://connect.mayoclinic.org/comment/869112/

Discussion: Life expectancy with NETs and lifetyle as it progresses

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 30, 2023

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