Neuroendocrine Tumors (NETs) Support Group

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Comments (362)

Hello, New here, found the group when searching NET on the Mayo Clinic website. My husband...

https://connect.mayoclinic.org/comment/800940/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 24, 2023

Hello Everyone I also have NETs that has metastasized on the inside of my Liver. I...

https://connect.mayoclinic.org/comment/739390/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 19, 2022

@mlassen1 Hello and welcome to Mayo Connect. I’ve been going to Mayo Jacksonville since 2017, started...

https://connect.mayoclinic.org/comment/1481778/

Discussion: Tips about preparing for my second opinion appointment at Mayo

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 13 10:50pm

I had genetic testing this year. Both a sibling and I found we had neuroendocrine tumors...

https://connect.mayoclinic.org/comment/1252480/

Discussion: To get genetic testing, or not?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 7, 2025

@sophiarose: I am awaiting my 4th PRRT early December 2024. How is your affected arm? What...

https://connect.mayoclinic.org/comment/1161212/

Discussion: PRRT side effects and results

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 22, 2024

Hi @hopeful33250 and thanks for reaching out. I went to the hospital on August 30th with...

https://connect.mayoclinic.org/comment/942618/

Discussion: Octreoscan/Ga-68 DOTATATE PET/CT -- Where to go?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 5, 2023

@robin5: Hi! I was diagnosed NET small intestine primary with liver metastases, grade1, well-def, stage 4,...

https://connect.mayoclinic.org/comment/1324502/

Discussion: Lanreotide side effects: diarrhea constipation, what to do?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 10, 2025

I'm now 2 years post resection of the small intestine due to NETs. I did have...

https://connect.mayoclinic.org/comment/1345232/

Discussion: How do I eat after digestive tract surgery?

Support Group: Digestive Health

Posted: Jul 10, 2025

I, too, have metastatic innumerable liver lesions, as well as in my pelvis, lymph nodes, and...

https://connect.mayoclinic.org/comment/811172/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 14, 2023

Thank you Teresa for the information on the carcinoid cancer foundation site and the Mayo Clinic...

https://connect.mayoclinic.org/comment/801356/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 25, 2023

Welcome, @4237220. I agree with @maya8238 that it sounds like the cancer has been caught early...

https://connect.mayoclinic.org/comment/797237/

Discussion: Confused about diagnosis: Carcinoid tumor in rectal area

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 15, 2023

I began PRRT in June 2024 and today received the 3rd infusion without any issues. I...

https://connect.mayoclinic.org/comment/1150466/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 1, 2024

Hello @rogerstc and welcome to the NETs support group on Mayo Connect. I am glad that...

https://connect.mayoclinic.org/comment/1014189/

Discussion: Anyone have a neuroendocrine tumor in small intestine?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 12, 2024

Hello @tkubista and welcome to Mayo Clinic Connect! I am sorry to hear about your NET...

https://connect.mayoclinic.org/comment/329137/

Discussion: Small bowel NET and colon cancer

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 7, 2020

Stay positive, I had 15 years ago nec in my small intestine, surgery sucesfully but secondary...

https://connect.mayoclinic.org/comment/1288577/

Discussion: I recently had surgery to remove NET in small intestine

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 24, 2025

Cobraman: Hi! I received diagnosis of small intestine (duodenum) NET tumor that had metastasized to liver...

https://connect.mayoclinic.org/comment/868984/

Discussion: Life expectancy with NETs and lifetyle as it progresses

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 30, 2023

@lastround your diagnosis seems so similar to my dads story in the sense of areas affected...

https://connect.mayoclinic.org/comment/834179/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 29, 2023

Looking back, I had symptoms of severe diarrhea 5 years before diagnosis. Nightime diarrhea including incontinence....

https://connect.mayoclinic.org/comment/1202313/

Discussion: Anyone have a neuroendocrine tumor (NET) in the spine?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 2, 2025

I was diagnosed with carcinoid of the small intestine in March, 2018 and had 10” of...

https://connect.mayoclinic.org/comment/1520444/

Discussion: Has anyone taken Prolia for bone loss after NETs treatment?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 5 2:54pm

@panorman3 , I, too, have an inoperable tumor. It’s in my stomach and was found 7...

https://connect.mayoclinic.org/comment/1260726/

Discussion: Diagnosing small bowel NETs with carcinoid syndrome

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 17, 2025

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