Neuroendocrine Tumors (NETs) Support Group

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Comments (2,369)

Caitrina, I am glad to see your comments after the liver debunking. It is helpful to...

https://connect.mayoclinic.org/comment/780435/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 3, 2022

I only had a biopsy on my liver. I have many tumors of all sizes on...

https://connect.mayoclinic.org/comment/1237754/

Discussion: Lanreotide Question: Why start before the next scan?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 15, 2025

Thank you, always like positive feedback. It is great you are doing well. The oncologist said...

https://connect.mayoclinic.org/comment/1220030/

Discussion: PNETs: What comes first? Surgery or try to shrink tumor with chemo?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 23, 2025

@amongst I still get the gallium dotatate PET to monitor my NETs. My primary is in...

https://connect.mayoclinic.org/comment/1498883/

Discussion: I saw the surgeon. More confused than ever.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 5 3:42pm

I was diagnosed with stage 3 atypical carcinoid in dec of 2023. Ki-67 number was 5....

https://connect.mayoclinic.org/comment/1266745/

Discussion: Atypical Lung NET treated with radiation: What was your outcome?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 25, 2025

I have pNET grade 2 stage 4 ( due to metastases in liver). I had distal...

https://connect.mayoclinic.org/comment/881155/

Discussion: My Sister and Best Friend

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 19, 2023

Hi Thanks for info, it’s the talk of things happening to liver etc that worries me,...

https://connect.mayoclinic.org/comment/1296122/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 4, 2025

Hello @bluebird1953 I'm sorry to hear that your husband is having such difficulty with carcinoid cancer....

https://connect.mayoclinic.org/comment/1307930/

Discussion: Anyone have swelling with liver metastases?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 19, 2025

My Husband was diagnosed with GI tract stage 4 Neuroendocrine carcinoid that spread to liver, lymph...

https://connect.mayoclinic.org/comment/1048688/

Discussion: Questions Regarding Results after PRRT Treatment

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 10, 2024

We have already had the primary removed in March 23, along with gall bladder, spleen, and...

https://connect.mayoclinic.org/comment/952558/

Discussion: Liver Transplant to Treat NETs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 23, 2023

If the tumors are confined to the liver only, has your doctor suggested a liver directed...

https://connect.mayoclinic.org/comment/1047345/

Discussion: Spreading NET

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 8, 2024

Surgery was done at Trinity Hospital in Ann Arbor Mich, not at Mayo. All my treatment...

https://connect.mayoclinic.org/comment/1380479/

Discussion: Questions for surgeon-considerations choosing PRRT or surgery

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 27, 2025

Hi there, I'm new here. Doctors diagnosed me with a neuroendocrine tumor in the terminal ileum...

https://connect.mayoclinic.org/comment/1376327/

Discussion: Neuroendocrine Tumor

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 21, 2025

@dadcue Hello Mike, Your imaging sounds a lot like mine from several months ago. If you...

https://connect.mayoclinic.org/comment/1540119/

Discussion: Neuroendocrine Tumor - no treatment plan method

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 1 7:21am

@fraaseo Thank you for sharing. My second surgery was also cytoreduction with removal of 92 cm...

https://connect.mayoclinic.org/comment/1556271/

Discussion: I have a neuroendocrine tumour in the small bowel and liver lesions

Support Group: Neuroendocrine Tumors (NETs)

Posted: 4 days ago

It seems to be! That’s what I had I have similar type pancreatic primary metatastic to...

https://connect.mayoclinic.org/comment/1326387/

Discussion: Scan shows interval progression on lanreotide: Is CAPTEM next?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 13, 2025

I had a CT scan for something else. There are tumors grade 1 in my liver...

https://connect.mayoclinic.org/comment/1301250/

Discussion: Anyone had liver surgery to remove liver metastasis from GI NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 10, 2025

Vein issue explained - but ongoing growth of liver tumor(s) means have to try new approach

https://connect.mayoclinic.org/comment/1328757/

Discussion: Help understand interval progression

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 16, 2025

Thank you I have an appointment today with my liver surgeon Hopefully I will know more

https://connect.mayoclinic.org/comment/934187/

Discussion: Bland Liver Embolization complication

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 22, 2023

@tomrennie PNET with metastasis to the liver. Found when I had a CT scan for another...

https://connect.mayoclinic.org/comment/1487938/

Discussion: Reccurrenct NETs and side effects of cap/tem

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 21 9:52am

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