Neuroendocrine Tumors (NETs) Support Group

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Comments (271)

I was diagnosed with Grade2 Stage IV metastasized from small intestines to liver. PET scan validated...

https://connect.mayoclinic.org/comment/1162526/

Discussion: NET on liver: Question about treatments when no symptoms

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 25, 2024

Thanks very much for your reply. I have been waiting for the Mayo Clinic E-Consult so...

https://connect.mayoclinic.org/comment/1161723/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 23, 2024

Might I suggest you get a 2nd opinion? It's just a thought. Also, possibly speak with...

https://connect.mayoclinic.org/comment/1072193/

Discussion: Spreading NET

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 21, 2024

My Husband was diagnosed with GI tract stage 4 Neuroendocrine carcinoid that spread to liver, lymph...

https://connect.mayoclinic.org/comment/1048688/

Discussion: Questions Regarding Results after PRRT Treatment

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 10, 2024

We thought since the endoscope was good and the colonoscopy was good. What are the odds...

https://connect.mayoclinic.org/comment/1003825/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 25, 2024

I was diagnosed with stage 4 NET’s December 2022, started in small intestines and metastasized to...

https://connect.mayoclinic.org/comment/901156/

Discussion: Should I want more treatment after pancreatic nets with lymph nodes?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 24, 2023

I found out 3 years ago that I have net cancer. Originated in small intestines and...

https://connect.mayoclinic.org/comment/848467/

Discussion: Differentiating Carcinoid syndrome from MCAS?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 24, 2023

My dear friend has had the 4 PRRT. She was ready to quit after 3 because...

https://connect.mayoclinic.org/comment/732819/

Discussion: PRRT for NETs: Questioning whether I should continue or not

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 31, 2022

Yesterday I saw an oncologist here in Tucson. His thought was that the primary tumor is...

https://connect.mayoclinic.org/comment/176713/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 28, 2019

I was suffering before my surgery with 3 small bowel constrictions due to Nets. I had...

https://connect.mayoclinic.org/comment/1216360/

Discussion: Carotid body tumor encasing completely carotid artery

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 19 9:56am

Good morning, the small intestines was the primary source of my NET’s before metastasizing to my...

https://connect.mayoclinic.org/comment/1204419/

Discussion: Can anyone share information about NET in small intestine?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 5 9:59am

We did find this out that there is extra help for Medicare patients with the drug...

https://connect.mayoclinic.org/comment/1135041/

Discussion: Short acting Ocreotide

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 2, 2024

Husband 4.5 years post pancreatectomy, with excision of the duodenum, pylorus, spleen, gallbladder and also has...

https://connect.mayoclinic.org/comment/1072741/

Discussion: Weight Loss after Whipple: What strategies helped you?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 22, 2024

I was diagnosed Dec. 2021 Tumors started in the small intestines and metastasized to the liver...

https://connect.mayoclinic.org/comment/1035643/

Discussion: What questions should I ask oncologist tumor types and chemo treatment

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 18, 2024

just facts here and you will have to decide for yourself--- and this was ten years...

https://connect.mayoclinic.org/comment/1030398/

Discussion: High risk surgery. Is it worth it?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 9, 2024

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

Did you read something or did someone advise your son against eating beef? I'm not a...

https://connect.mayoclinic.org/comment/969833/

Discussion: Octreotide Injections - Skipping One or More?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 24, 2023

Hello @joy5877 and welcome to the NETs support group on Mayo Connect. I'm pleased that you...

https://connect.mayoclinic.org/comment/940369/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 2, 2023

I was diagnosed in March 2018 with NETs in multiple locations after having a blockage in...

https://connect.mayoclinic.org/comment/807089/

Discussion: Interested in hearing people's experiences with PRRT

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 6, 2023

Hi I feel every bite of your trails I traveled almost the same road , misdiagnosed...

https://connect.mayoclinic.org/comment/792778/

Discussion: Frustrated with the medical establishment

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 5, 2023

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