Neuroendocrine Tumors (NETs) Support Group

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Comments (231)

Hi, I went for whipple in 2020 as found a PNET Gastrinoma Grade1 Functional. In July...

https://connect.mayoclinic.org/comment/1162931/

Discussion: NET on liver: Question about treatments when no symptoms

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 26, 2024

Bethany, I cannot answer the insurance question so I will defer that to someone else who...

https://connect.mayoclinic.org/comment/1024131/

Discussion: Does Mayo Clinic do insulinoma testing?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 28, 2024

Thanks for the question about returning to a normal diet after distal pancreatectomy and splenectomy. I...

https://connect.mayoclinic.org/comment/809795/

Discussion: Surgery of PNET

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 11, 2023

Hi Sunshyn, may I knows 3 times PET scans within a period of how long? Any...

https://connect.mayoclinic.org/comment/1277034/

Discussion: High or Fluctuating Chromogranin A Level: What does it mean?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 8, 2025

My son was diagnosed in July 2025. He has had 9 treatments. He will complete a...

https://connect.mayoclinic.org/comment/1443383/

Discussion: Anyone have Pancreatic Acinar Cell Carcinoma?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 20, 2025

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

Good morning and welcome to the group! What information are you looking for on insulinomas? I...

https://connect.mayoclinic.org/comment/698565/

Discussion: NET - Insulinoma

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 13, 2022

Hi everyone, I had my whipple done on May 2020 for Gastrinoma PNET. Since July 2024...

https://connect.mayoclinic.org/comment/1149137/

Discussion: Diagnosed with Stage 4 pancreatic neuroendocrine metastasized to liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 29, 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

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

Hello @cottagepeople! My pancreatic NET was found during an EUS for a liver biopsy! I was...

https://connect.mayoclinic.org/comment/775334/

Discussion: Investigations for pancreatic lesions, NETs? Confused and concerned

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 20, 2022

Hi @mayberries, welcome. I see that you have recently been diagnosed with pancreatic NET and you...

https://connect.mayoclinic.org/comment/804962/

Discussion: What's the best way to detect liver metastases?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 1, 2023

After my whipple procedure Mar 2020 my Chromogranin A and Serotonin levels remained higher than normal,...

https://connect.mayoclinic.org/comment/967519/

Discussion: High or Fluctuating Chromogranin A Level: What does it mean?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 19, 2023

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

I also have insulinomas. . . Diagnosed originally in 2015 with 2 tumors in the pancreas,...

https://connect.mayoclinic.org/comment/867769/

Discussion: Life expectancy with NETs and lifetyle as it progresses

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 27, 2023

Oh yes head had explosive diarrhea for almost a year now. Been to gastrointestinal specialist and...

https://connect.mayoclinic.org/comment/1287448/

Discussion: Gastrinomas and Whipple procedure

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 22, 2025

Hi @pamsbass, I had a Pyloric preserving pancreaticoduodenectomy (modified Whipple) liver resection and liver ablation in...

https://connect.mayoclinic.org/comment/1001236/

Discussion: Need more information on NET in head of pancreas

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 21, 2024

Hello @tbraibish and welcome to the NETs support group on Mayo Connect. You have certainly offered...

https://connect.mayoclinic.org/comment/1073344/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 23, 2024

I would also recommend you have both types of petscans done. It took 5 years to...

https://connect.mayoclinic.org/comment/932546/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 19, 2023

Hello @bmkelldog! I completely understand your frustration! Diagnosing and then locating insulinomas, due to their small...

https://connect.mayoclinic.org/comment/1339069/

Discussion: NET - Insulinoma

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 1, 2025

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