Neuroendocrine Tumors (NETs) Support Group

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Comments (2,370)

I also was 48 when first diagnosed with NETs. My primary care Dr. totally missed the...

https://connect.mayoclinic.org/comment/277071/

Discussion: I am not ok with this at all

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 30, 2019

Sorry to read about your circumstance. My NET is a Insulinoma, pancreas to liver, also too...

https://connect.mayoclinic.org/comment/874444/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 7, 2023

Diagnosed with NELM 2017 with unknown primary, well differentiated grade 2 in liver and abdominal area....

https://connect.mayoclinic.org/comment/998435/

Discussion: Statistics on progression free survival while on SSA / Lanreotide

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 16, 2024

Diazoxide is only med prescribed to help hypoglycemia caused by endocrine tumors. If cornstarch worked they...

https://connect.mayoclinic.org/comment/934254/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 22, 2023

Hi Sandi You are a blessed person 19 year. Wow!!!! I was on lanreotide and had...

https://connect.mayoclinic.org/comment/746905/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 8, 2022

How old is your wife? I'm 55yr old Male and I had a SI resection, primary...

https://connect.mayoclinic.org/comment/994044/

Discussion: Diagnosed with Stage 4 pancreatic neuroendocrine metastasized to liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 8, 2024

My pancreas had an 8x6cm tumor. My liver also had innumerable lesions with the largest being...

https://connect.mayoclinic.org/comment/1254696/

Discussion: Living with Neuroendocrine NETS, any advice?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 10, 2025

Had appts at Mayo this week and CT scan shows growth in multiple liver tumors. Switching...

https://connect.mayoclinic.org/comment/771583/

Discussion: Anyone gone to Mayo Clinic in Rochester Minnesota for carcinoid tumors?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 10, 2022

I was diagnosed with NETS WITH METASTASIS to my liver. I had a transplant. It was...

https://connect.mayoclinic.org/comment/949270/

Discussion: Liver Transplant to Treat NETs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 17, 2023

It was a ' combined' pancreatectomy ( with spleen and gallbladder removal), liver debulking AND hysterectomy...

https://connect.mayoclinic.org/comment/847119/

Discussion: Who has had Distal Pancreatectomy and regretted it?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 21, 2023

Hello @dbamos1945 I just noticed that @caitrina's post is in the liver debulking group, however, she...

https://connect.mayoclinic.org/comment/780507/

Discussion: NETs: Anyone has Liver debulking for liver metastasis?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 3, 2022

Thanks for your reply. Have your doctors ever run any tests to determine if pancreas or...

https://connect.mayoclinic.org/comment/1207772/

Discussion: Clay colored bowels & diarrhea side effects with Octreotide

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 9, 2025

Have worsening symptoms for close to 20 years but much progression since Sep 21 with multiple...

https://connect.mayoclinic.org/comment/748820/

Discussion: Liver mets mistaken as hemangioma or harmatoma on MRI

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 12, 2022

@kgrear mine are tiny too. another recommended treatment for multiple liver lesions they may try is...

https://connect.mayoclinic.org/comment/1435702/

Discussion: S4, G2 NETS in mesentery. Declined Exploratory Surgery

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 11, 2025

MRI about every 4 months, eating is going too well. Thus the increased severity of Fatty...

https://connect.mayoclinic.org/comment/1203376/

Discussion: Anyone have a neuroendocrine tumor (NET) in the spine?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 3, 2025

Hello, my husband has stage 4 Neuroendocrine Tumor Cancer. He had a large tumor on his...

https://connect.mayoclinic.org/comment/1408542/

Discussion: Y90 AND Captem Combo

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 4, 2025

In my experience every time I read the latest scans summary, it's a day of new...

https://connect.mayoclinic.org/comment/1219632/

Discussion: Liver masses found on CT Scan

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 23, 2025

I am right with you with your feelings. I had stage 4 Neuroendocrine cancer of small...

https://connect.mayoclinic.org/comment/163994/

Discussion: The Roller Coaster Ride of Cancer

Support Group: Cancer

Posted: Dec 4, 2019

My embolization was January 12, 2023 It took me about a month to truly recover After...

https://connect.mayoclinic.org/comment/829069/

Discussion: Bland embolization or transarterial chemoembolization (TACE)

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 20, 2023

@tgsenn70 Sure. But first, is your husband seeing a net specialist? Is the iv chemotherapy you...

https://connect.mayoclinic.org/comment/1404439/

Discussion: New pNET so scared

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 29, 2025

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