Neuroendocrine Tumors (NETs) Support Group

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Comments (271)

@firepowr if you don’t mind me asking, what have they said about yours that is considered...

https://connect.mayoclinic.org/comment/813521/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 18, 2023

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 10:44am

Mikhailsapenko, my experience was similar to yours in that I had been in/out of the ER...

https://connect.mayoclinic.org/comment/1194781/

Discussion: Still have symptoms after surgery

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 21, 2024

Hi harley4650, sorry to hear that treatment is not working as hoped. In addition to the...

https://connect.mayoclinic.org/comment/1037432/

Discussion: Treatment for GI NET with liver mets not working: Options?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 20, 2024

Glad to join this group. My tumor on the outside of the small intestine was found...

https://connect.mayoclinic.org/comment/886230/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 27, 2023

My experience: After discovery in Mar./2023 of a Grade 2, Small intestine NETs that metastasized to...

https://connect.mayoclinic.org/comment/1061064/

Discussion: Updating about My Lanreotide Injections & CT Scan

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 2, 2024

Good morning to (hello it’s me) I was diagnosed Dec. 2022.. started in small intestine and...

https://connect.mayoclinic.org/comment/851326/

Discussion: Just diagnosed: Metastatic NETs. Treatment?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 29, 2023

Dbamos1945 and bubbles 2023 - Dbamos, your response struck a cord with me as your response...

https://connect.mayoclinic.org/comment/885814/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 26, 2023

Yes, there is a diagnostic test you can and should have. It's a PT CT Dototate...

https://connect.mayoclinic.org/comment/792451/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 4, 2023

Kwan, I had PRRT at Mayo in Phoenix from April - October 2021 for various non-resectable...

https://connect.mayoclinic.org/comment/1060569/

Discussion: Questions Regarding Results after PRRT Treatment

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 1, 2024

Hi @taneall I am in the same boat as your husband...grade 1, stage 4. It is...

https://connect.mayoclinic.org/comment/892998/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 9, 2023

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

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

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

@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

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

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

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