Neuroendocrine Tumors (NETs) Support Group

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Comments (231)

Thank you Teresa. In August of 2019 I went to the ED for abdominal pain, after...

https://connect.mayoclinic.org/comment/257017/

Discussion: Interested in hearing people's experiences with PRRT

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 21, 2020

Hi c2pricorn66 I had a similar story, accidentally found a tumor on my pancreas identified as...

https://connect.mayoclinic.org/comment/921859/

Discussion: Found PNET on tail of pancreas but told it’s nonfunctional

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 31, 2023

Patrick, were your tumors NET’s? Who is your oncologist at Barnes? I was diagnosed with a...

https://connect.mayoclinic.org/comment/1031029/

Discussion: High risk surgery. Is it worth it?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 10, 2024

I am also 4’11” and find it hard to put the weight back on! Got down...

https://connect.mayoclinic.org/comment/989041/

Discussion: Weight Loss after Whipple: What strategies helped you?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 31, 2023

I will. I'm lucky, I totaled my truck on the turnpike going 75, passed out from...

https://connect.mayoclinic.org/comment/840052/

Discussion: Ways to control hypoglycemia caused by insulinoma in pancreas?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 8, 2023

I am equally confused with all these scans reports. On 8 July 24, CT scan revealed...

https://connect.mayoclinic.org/comment/1185942/

Discussion: What causes differences in reading of CAT Scan and MRI imaging?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 7, 2024

Hi Linda How did your scan go? Lots has happened since my last post. I had...

https://connect.mayoclinic.org/comment/837244/

Discussion: Recurrence in Liver after Whipple

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 4, 2023

I did have a good experience in NC. Duke is where my initial diagnosis and was...

https://connect.mayoclinic.org/comment/1037088/

Discussion: Does Mayo Clinic do insulinoma testing?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 20, 2024

Hi Brittany I am 6 years out of a modified Whipple taking the remaining pancreas and...

https://connect.mayoclinic.org/comment/1394309/

Discussion: Symptomatic after two years out from Whipple

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 16, 2025

Welcome to the group! To say the least insulinomas can be challenging! Every case is a...

https://connect.mayoclinic.org/comment/1113245/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 28, 2024

Hi Sue! I too was in the situation of watching waiting, which I did for 6mos....

https://connect.mayoclinic.org/comment/1356627/

Discussion: New PNET Question Re: Surgery (I'm in bit of a pickle)

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 26, 2025

As you may already know ( I did reply last week ) I had surgery at...

https://connect.mayoclinic.org/comment/134708/

Discussion: NET - Insulinoma

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 15, 2020

My sympathies to you… vomiting bile f##king sucks. I had a Whipple procedure to remove a...

https://connect.mayoclinic.org/comment/1437545/

Discussion: How do I eat after digestive tract surgery?

Support Group: Digestive Health

Posted: Nov 13, 2025

Thank you for posting their links. I starting experiencing periodic hypoglycemia about a year and a...

https://connect.mayoclinic.org/comment/1140051/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 11, 2024

I lost about 30lbs following my whipple. My procedure removed my duodenum, gall bladder and a...

https://connect.mayoclinic.org/comment/1073278/

Discussion: Weight Loss after Whipple: What strategies helped you?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 23, 2024

Hi vtn So I didn’t have the gallium first. So when they did the first recheck...

https://connect.mayoclinic.org/comment/858909/

Discussion: Just diagnosed with PNET: Any thoughts on watch & wait approach?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 12, 2023

Many thanks for your response. I offer the following brief summary of Sharon's NET history. 1....

https://connect.mayoclinic.org/comment/744920/

Discussion: Recommendation for Seattle Cancer Care Alliance MDs Treating NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 3, 2022

@ceefer, is your medical team sure it's just "stomach pain," and NOT chronic pancreatitis? Asking, because...

https://connect.mayoclinic.org/comment/1554346/

Discussion: Anyone with a grade 1 Pancreatic NET have constant stomach pains?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 19 10:59am

Sorry to hear about your husband's pain during recovery. I had a modified whipple surgery, liver...

https://connect.mayoclinic.org/comment/817685/

Discussion: Has anyone had referred shoulder pain in post pancreatectomy?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 26, 2023

Welcome to the group! Insulinoma diagnosis can be tricky. In brief, I was diagnosed in 2015...

https://connect.mayoclinic.org/comment/889522/

Discussion: NET - Insulinoma

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 3, 2023

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