Neuroendocrine Tumors (NETs) Support Group

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Comments (435)

My Journey of doctors and second opinions - Local Community PCP ordered Ultrasound because of Liver...

https://connect.mayoclinic.org/comment/842699/

Discussion: Has anyone chosen the Watch and Wait and regretted that choice?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 13, 2023

Hi Billyfeet, I was diagnosed in 2012 with a NET on the head of the pancreas...

https://connect.mayoclinic.org/comment/842404/

Discussion: Has anyone chosen the Watch and Wait and regretted that choice?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 12, 2023

Sorry to hear that Delores. I was diagnosed with stage four pancreatic cancer that spread to...

https://connect.mayoclinic.org/comment/842181/

Discussion: What do I need to know about NETS?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 12, 2023

I’m 63, no systems at all. NET discovered while getting a hernia repaired in April of...

https://connect.mayoclinic.org/comment/837694/

Discussion: Just diagnosed with pancreatic NET stage 1

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 4, 2023

Right now I’m being seen at Johns Hopkins. Because of a developing bowel obstruction the procedures...

https://connect.mayoclinic.org/comment/834012/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 29, 2023

@bnjncrew - welcome to the NET insulinoma group. There are several on or around this page...

https://connect.mayoclinic.org/comment/831029/

Discussion: Neuroendocrine Insulinoma: Is treatment different for this type?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 24, 2023

Hi @ahtaylor, This is a great question! I had my first surgery for NETs in the...

https://connect.mayoclinic.org/comment/828910/

Discussion: Recurrence in Liver after Whipple

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 20, 2023

I was diagnosed in January 2020, grade 3 NETs with tumors in liver, lungs, pancreas, bones,...

https://connect.mayoclinic.org/comment/828078/

Discussion: High grade 2 and 3 neuroendocrine

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 18, 2023

Cindy, I had surgery of pancreatic NET on Feb.1. No flushung before, but have a lot...

https://connect.mayoclinic.org/comment/825522/

Discussion: Flushing after NET surgery

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 13, 2023

I did the watch and wait for a small (1cm) PNET on the head of my...

https://connect.mayoclinic.org/comment/815227/

Discussion: Cough ! What could it be?!

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 21, 2023

Hi katballoo! I am so glad you will be going to Mayo in Rochester. You couldn’t...

https://connect.mayoclinic.org/comment/814408/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 20, 2023

I was put on Folfirinox chemo for 12 treatments every 2 weeks for 3 days. I...

https://connect.mayoclinic.org/comment/812054/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 15, 2023

Hi My sugars dropped to 37 last July when I passed out in my car....found the...

https://connect.mayoclinic.org/comment/811873/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 15, 2023

I’m in the same boat. I had no symptoms. It started in my pancreas and spread...

https://connect.mayoclinic.org/comment/811233/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 14, 2023

Get it removed asap. If it spreads your going to be in trouble. I have NET...

https://connect.mayoclinic.org/comment/810674/

Discussion: Scared - Suspected NET on tail of the pancreas

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 13, 2023

Mark, I was diagnosed with NETs (grade 2/3, inoperable, incurable) in Jan 2020 at Mayo Rochester....

https://connect.mayoclinic.org/comment/807712/

Discussion: Interested in hearing people's experiences with PRRT

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 7, 2023

@skkirby Hello Sherry, Sharing your experience here on Mayo Connect is encouraging for many who are...

https://connect.mayoclinic.org/comment/806376/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 4, 2023

Yes I am actually not at a clinic but a hospital. They have done a CT,...

https://connect.mayoclinic.org/comment/803331/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 29, 2023

My wife @kim1965 was diagnosed with NET on tail of pancreas and numerous tumors on liver...

https://connect.mayoclinic.org/comment/802307/

Discussion: Just diagnosed with pancreatic NET stage 1

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 27, 2023

My wife was diagnosed with NET in April 2022, with mass on tail of pancreas, and...

https://connect.mayoclinic.org/comment/797689/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 16, 2023

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