Neuroendocrine Tumors (NETs) Support Group

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This page is active I watch the comments and jump in when appropriate. Great way to...

https://connect.mayoclinic.org/comment/1463460/

Discussion: Anyone have problems with elevated blood pressure while on Lanreotide?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 18, 2025

@ricki8: I would love to learn about your Histotripsy procedure for Liver Mets, since I have...

https://connect.mayoclinic.org/comment/1465624/

Discussion: Primary Small Bowel NETS, Liver Mets

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 22, 2025

Have an insulinoma (diagnosed 12/23) and have had many types of treatment including pancreatic surgery in...

https://connect.mayoclinic.org/comment/1336437/

Discussion: NET - Insulinoma

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 27, 2025

Thank you for your encouragement. The exhaustion comes & goes. The primary is a carcinoid, very...

https://connect.mayoclinic.org/comment/977617/

Discussion: After liver embolization: Looking for the best diet + food suggestions

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 9, 2023

UPDATE... NET specialist says I'm lucky. And rare as my SBNETs does not seem to have...

https://connect.mayoclinic.org/comment/1224979/

Discussion: Cu-64 Dotatate PET results show no malignancy. What’s next?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 29, 2025

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

Hi Joy, each case of NET is different. I can share our case to give you...

https://connect.mayoclinic.org/comment/952987/

Discussion: Liver Transplant to Treat NETs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 24, 2023

Hi Neuroendocrine Group, I am Neuroendocrine Breast Cancer (rare) with mets in liver and bones. It...

https://connect.mayoclinic.org/comment/766898/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 29, 2022

Hello @dbamos1945, I understand that you are looking to connect with others who have had NET...

https://connect.mayoclinic.org/comment/775970/

Discussion: Treatments for Carcinoids

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 21, 2022

I have been having the monthly injections of Octreatide. (Sp?) for about a year. It also...

https://connect.mayoclinic.org/comment/1303282/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 13, 2025

Hi, breck from Iowa! I’m from Florida, have NETS in my liver and small intestine.. Welcome!

https://connect.mayoclinic.org/comment/1169290/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 7, 2024

How was his liver debulking surgery? How long ago was it? What grade is he and...

https://connect.mayoclinic.org/comment/898937/

Discussion: 4 treatment options from my doctor, which one should I start with?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 20, 2023

He’s done blood work and says it’s okay even though liver enzymes are high and WBC...

https://connect.mayoclinic.org/comment/728985/

Discussion: PRRT for NETs: Questioning whether I should continue or not

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 21, 2022

Everybody responds to treatments differently. My husband had a completely different result after his y90 which...

https://connect.mayoclinic.org/comment/1360675/

Discussion: Anyone on cabozantinib after Y90

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 31, 2025

I have a 4.5 cm tumor in the head of the pancreas and an atrophied tail...

https://connect.mayoclinic.org/comment/1336098/

Discussion: Y90 AND Captem Combo

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 27, 2025

Hi Renee, I am also in the same frustrating situation as have gone for CT scan,...

https://connect.mayoclinic.org/comment/1265384/

Discussion: Diagnosis Frustrated: How you were diagnosed with NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 24, 2025

Hello! I have similar diagnosis - pNET and liver metastases. Surgery for the pNET and debulking...

https://connect.mayoclinic.org/comment/1076200/

Discussion: Neuroendocrine Carcinoma with Liver Metastasis

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 28, 2024

I just visited Mayo Rochester. Was diagnosed in April 2023 with Neuroendocrine cancer of the small...

https://connect.mayoclinic.org/comment/873758/

Discussion: NETs: Scheduled for small intestine resection: What to expect?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 6, 2023

Welcome, Christine. You're not alone. I moved your message to this existing discussion: - Newly diagnosed...

https://connect.mayoclinic.org/comment/750122/

Discussion: Newly diagnosed with NET in liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 15, 2022

We did find this out that there is extra help for Medicare patients with the drug...

https://connect.mayoclinic.org/comment/1135041/

Discussion: Short acting Ocreotide

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 2, 2024

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