Neuroendocrine Tumors (NETs) Support Group

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Hello @dak10, I so appreciate hearing from you again with some more information on your journey...

https://connect.mayoclinic.org/comment/827367/

Discussion: Newly diagnosed-Primary Malignant Neuroendocrine of Lung

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 17, 2023

Hi, I SO feel for your partner! I have primary pancreatic net, liver mets. and had...

https://connect.mayoclinic.org/comment/1294137/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 1, 2025

I was diagnosed with net cancer December 2020. Originated in small intestines and spread to liver....

https://connect.mayoclinic.org/comment/856717/

Discussion: Just diagnosed: Metastatic NETs. Treatment?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 8, 2023

@dadcue i would do the scan so if you actually do have a net/s you can...

https://connect.mayoclinic.org/comment/1523385/

Discussion: Diagnosis Frustrated: How you were diagnosed with NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 9 3:13pm

I also have NET pancreas to liver and type 2 diabetes. I am taking CAPTEM. I...

https://connect.mayoclinic.org/comment/836209/

Discussion: Anyone dealing with Carcinoid NETs with Diabetes?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 2, 2023

I would definitely see a NET specialist, I have carcinoid syndrome , NET’s started in my...

https://connect.mayoclinic.org/comment/1294461/

Discussion: What should I do? Carcinoid symptoms but no answers.

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 1, 2025

Thanks very: much for sharing. Were you taking any medications prior to Lanreotide three months ago?...

https://connect.mayoclinic.org/comment/1171155/

Discussion: Experience w/ watch and wait approach for metastatic liver tumor

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 10, 2024

When is your surgery? Or have you already had your surgery? If so, how did it...

https://connect.mayoclinic.org/comment/1122974/

Discussion: Pancreatic NETs: Looking to connect with anyone with insulinoma

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 13, 2024

I too am Atypical lung net. It has spread to liver and several vertebrae in my...

https://connect.mayoclinic.org/comment/939666/

Discussion: Atypical Lung NET treated with radiation: What was your outcome?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 1, 2023

Hello, My husband also has insulinoma. Pancreas metastasized to liver. We have found that a tablespoon...

https://connect.mayoclinic.org/comment/890321/

Discussion: NET - Insulinoma

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 5, 2023

Your response is sincerely appreciated - My wife is scheduled for PRRT @Fred Hutch Seattle on...

https://connect.mayoclinic.org/comment/808550/

Discussion: Interested in hearing people's experiences with PRRT

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 9, 2023

I was on CAPTEM for 13 cycles. My pnet and largest liver lesion shrunk in half....

https://connect.mayoclinic.org/comment/1358810/

Discussion: Neuroendocrine tumor pancreatic tail

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 28, 2025

Update on Captem and Y90. After the 3 month mark, they had xaid the tumors in...

https://connect.mayoclinic.org/comment/1531803/

Discussion: Y90 AND Captem Combo

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 21 3:42am

It depends on the tumor type, biology, location, and treatment response. Overall, liver lesions are very...

https://connect.mayoclinic.org/comment/1315821/

Discussion: Pancreatic Cancer Q&A with Dr. Stauffer, Mayo Surgeon: Archive

Support Group: Pancreatic Cancer

Posted: May 29, 2025

I was diagnosed in Jan. with pancreatic tumors in the tail of my pancreas that has...

https://connect.mayoclinic.org/comment/1268556/

Discussion: Any one with Neuroendocrine tumors getting the shot once a month?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 28, 2025

4 nights in the hospital after the surgery. Eating mostly plant based diet plus fish. No...

https://connect.mayoclinic.org/comment/853249/

Discussion: Anyone else get bloating and abdominal pain from NETS or Lanreotide?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 2, 2023

Thanks for the feedback firepower. I also have grade 3 Ki67 of 42 and am looking...

https://connect.mayoclinic.org/comment/828496/

Discussion: High grade 2 and 3 neuroendocrine

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 19, 2023

@stevestenberg31 he did last week! Unfortunately not enough uptake of the tracer so PRRT is not...

https://connect.mayoclinic.org/comment/824943/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 12, 2023

I was dx in may with net in small intestine tumor was removed but pep scan...

https://connect.mayoclinic.org/comment/758557/

Discussion: Prognosis for Metastasized NET

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 7, 2022

Welcome, @amani79. Glad you joined us here. I am a moderator on this site, but on...

https://connect.mayoclinic.org/comment/163138/

Discussion: How to get a second opinion for an international patient??

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 10, 2017

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