Neuroendocrine Tumors (NETs) Support Group

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Comment

Hello, my tumor was discovered by accident while they were checking for kidney stones. My symptom...

https://connect.mayoclinic.org/comment/711583/

Discussion: Pancreatic NF-NET stable since 2005 - surgery or not?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 26, 2022

Comment

Hello Bridget1980 I am 44 Y/O and I was diagnosed with PNET on 11/27/22. I also...

https://connect.mayoclinic.org/comment/801102/

Discussion: Just diagnosed with pancreatic NET stage 1

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 24, 2023

Comment

Hi. I guess my original post was confusing. I had a PNet resected and now I...

https://connect.mayoclinic.org/comment/880746/

Discussion: Should I see a NET specialist?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 18, 2023

Comment

Hi! I live in Calgary and I have Stage 4 pNET with overwhelming liver mets. My...

https://connect.mayoclinic.org/comment/1204588/

Discussion: Neuroendocrine Carcinoma with Liver Metastasis

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 5, 2025

Comment

@amongst That's great that you have a specialist, because treatment with an unknown primary adds an...

https://connect.mayoclinic.org/comment/1499461/

Discussion: I saw the surgeon. More confused than ever.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 6 11:29am

Comment

Cabometyx (or cabozantinib) has been around since about 2010, recently approved for well-differentiated pNET and epNETs....

https://connect.mayoclinic.org/comment/1356064/

Discussion: New approved drug for pNETs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 25, 2025

Comment

Thanks for sharing. There is a lot of great information here. I am grade 2 pnet...

https://connect.mayoclinic.org/comment/1291042/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 27, 2025

Comment

Hello! Welcome to the ' zebra club' :). I had somewhat complicated case , as had...

https://connect.mayoclinic.org/comment/1074310/

Discussion: newly diagnosed pNET on tail of pancreas

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 25, 2024

Comment

My tumor is on the head of my pancreas. It is well defined, l.7 cm. Non...

https://connect.mayoclinic.org/comment/1027073/

Discussion: Is enucleation appropriate for me?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 3, 2024

Comment

@briana311 I was on CAPTEM for 13 cycles. It reduced the sizes of my pnet and...

https://connect.mayoclinic.org/comment/1511532/

Discussion: NETs growing despite 3 months of capecitabine and temozolomide

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 21 7:01pm

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