Neuroendocrine Tumors (NETs) Support Group

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Comments (323)

Hello @matt2024 ! I too have pNET but with liver metastases. Had distal pancreatectomy ( with...

https://connect.mayoclinic.org/comment/1082347/

Discussion: Grade 1 Non-functioning (NF) NET

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 7, 2024

Hang in there @ahilker! I had similar situation, no primary site discovered during surgery, pNET debulked,...

https://connect.mayoclinic.org/comment/866356/

Discussion: Diagnosed with Stage 4 pancreatic neuroendocrine metastasized to liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 25, 2023

Thank you, yes that is me and my passion that the pain keeps me from. I...

https://connect.mayoclinic.org/comment/733482/

Discussion: Pituitary and pNET: Can't do the things I love anymore

Support Group: Brain Tumor

Posted: Aug 2, 2022

I have been diagnosed with pNET in December 2022. Grade 3 (Ki=18) with liver metastases (Stage4)....

https://connect.mayoclinic.org/comment/1035345/

Discussion: Anyone have experience with "functioning" Pancreatic NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 17, 2024

I would like to thank you so much for this reply and the link for the...

https://connect.mayoclinic.org/comment/922987/

Discussion: Just diagnosed with pancreatic NET stage 1

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 2, 2023

I have a PNET also Stage 1 found via an EUS Ultrasound. I understand your feelings...

https://connect.mayoclinic.org/comment/922586/

Discussion: Just diagnosed with pancreatic NET stage 1

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 1, 2023

Hello @charliepnet and welcome to the NETs support group on Mayo Connect. Your oncology surgeon would...

https://connect.mayoclinic.org/comment/1024572/

Discussion: Is enucleation appropriate for me?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 28, 2024

Thanks for your post. Can you tell me how old your wife is please? I had...

https://connect.mayoclinic.org/comment/1075303/

Discussion: newly diagnosed pNET on tail of pancreas

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 26, 2024

My son finished his 4th treatment of PRRT in February and had his petscan Dotatate taken...

https://connect.mayoclinic.org/comment/1056415/

Discussion: Questions Regarding Results after PRRT Treatment

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 24, 2024

I had the PNET-pancreatic tail/spleen removed Jan 2018 then a very large post-op fluid collection removed...

https://connect.mayoclinic.org/comment/176695/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 17, 2019

Hi - PNet diagnosis in September of ‘20 …. (4) total tumors …. Three in pancreas...

https://connect.mayoclinic.org/comment/1304507/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 15, 2025

May 8 (last week), I had a distal pancreatectomy & splenectomy. There was a 1.1 cm...

https://connect.mayoclinic.org/comment/860908/

Discussion: Just diagnosed with pancreatic NET stage 1

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 16, 2023

Hi. In December 2019 I had a biopsy that showed I had a 2cm non-functioning malignant...

https://connect.mayoclinic.org/comment/1067425/

Discussion: Grade 1 Non-functioning (NF) NET

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 13, 2024

I am also a PNET, you more in the tail and head. I had two surgeries....

https://connect.mayoclinic.org/comment/995967/

Discussion: PNET on tail of pancreas with numerous bilobar hepatic metastases

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 12, 2024

my husband is on the same treatment and they were going to give him less sandostatin...

https://connect.mayoclinic.org/comment/873205/

Discussion: Diagnosed with Stage 4 pNET: What should I know?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 5, 2023

And in response to your question, above, Mayo found my tumor with a MRI, but followed...

https://connect.mayoclinic.org/comment/877813/

Discussion: Where can I find a carcinoid syndrome specialist in Florida?!

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 13, 2023

We actually never had trouble getting help. His pnet was found incidentally and we’ve only seen...

https://connect.mayoclinic.org/comment/979642/

Discussion: NET symptoms despite follow-up lab work ok

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 13, 2023

A team at MAYO have looked at my scans and test results I have sent them...

https://connect.mayoclinic.org/comment/1041280/

Discussion: Is enucleation appropriate for me?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 27, 2024

Hi Jon, I also have Gastrinoma PNET of Grade 1, Stage 1, well defined, functional tumor...

https://connect.mayoclinic.org/comment/1287366/

Discussion: Gastrinomas and Whipple procedure

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 22, 2025

Yesterday I had a 3 month follow up scheduled to see the NET specialist in St....

https://connect.mayoclinic.org/comment/1032859/

Discussion: Is enucleation appropriate for me?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 13, 2024

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