Neuroendocrine Tumors (NETs) Support Group

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Comments (2,370)

I don’t know what to say. Mine is an Insulinoma, Pancreas and spread to my Liver....

https://connect.mayoclinic.org/comment/866991/

Discussion: Life expectancy with NETs and lifetyle as it progresses

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 26, 2023

@lully2505 , how might we help guide you through tour upcoming surgery. My wife had a...

https://connect.mayoclinic.org/comment/938747/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 29, 2023

I’m new to this world of Oncology as well. My dx NET tumor with metastasized to...

https://connect.mayoclinic.org/comment/774811/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 18, 2022

Thanks 56span. I have heard of this reversal and will raise this with my oncologist regarding...

https://connect.mayoclinic.org/comment/1429366/

Discussion: Anyone have Pancreatic Acinar Cell Carcinoma?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 2, 2025

I recommend a high quality MRI which is the best modality (although also imperfect) to identify...

https://connect.mayoclinic.org/comment/1315829/

Discussion: Pancreatic Cancer Q&A with Dr. Stauffer, Mayo Surgeon: Archive

Support Group: Pancreatic Cancer

Posted: May 29, 2025

I am doing great. On my 11th cycle of just capecitabine. My scan last Friday still...

https://connect.mayoclinic.org/comment/1104625/

Discussion: Diagnosed with Stage 4 pancreatic neuroendocrine metastasized to liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 12, 2024

If you don't mid me asking, What was your grade and stage 11 years ago? My...

https://connect.mayoclinic.org/comment/1285740/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 19, 2025

My liver had an 8x6cm lesion and my pancreas had an 8x6cm tumor which was my...

https://connect.mayoclinic.org/comment/1205615/

Discussion: Living with Neuroendocrine NETS, any advice?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 6, 2025

I see Dr Chauhan at UM in Miami and he is excellent and leading authority in...

https://connect.mayoclinic.org/comment/1108755/

Discussion: Diagnosed with Stage 4 pancreatic neuroendocrine metastasized to liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 20, 2024

Hi, I also have Neuroendocrine of in the body pancreas along with small spots on my...

https://connect.mayoclinic.org/comment/796907/

Discussion: Pancreatic NF-NET stable since 2005 - surgery or not?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 15, 2023

@lastround your diagnosis seems so similar to my dads story in the sense of areas affected...

https://connect.mayoclinic.org/comment/834179/

Discussion: Lost with no confirmation of NETs origin: Innumerable liver lesions

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 29, 2023

Hi mbg20, My husband has recently had a small bowel resection on Feb 27. He originally...

https://connect.mayoclinic.org/comment/830442/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 22, 2023

I also have tumor metastases on my spine and ribs, unknown primary. Diagnosed Jan 2020, multiple...

https://connect.mayoclinic.org/comment/810800/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 13, 2023

Welcome @sueannsellers. I'm glad to hear that you are being referred to Mayo Clinic for consultation...

https://connect.mayoclinic.org/comment/806557/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 5, 2023

Just checking in and saying hello before the support group meeting tomorrow. I am new to...

https://connect.mayoclinic.org/comment/713387/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 1, 2022

Sometimes it works to stabilize tumor growth sometimes it doesn’t! I too have pancreatic primary metatastic...

https://connect.mayoclinic.org/comment/1323715/

Discussion: First scan after 3 months of lanreotidec

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 9, 2025

I was diagnosed in January 2020–grade 3, well-differentiated, pancreatic primary with mets to liver, lungs, parotid...

https://connect.mayoclinic.org/comment/1528856/

Discussion: Folfox side effects very difficult, ideas to manage?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 17 8:52am

Thank you so much for your reply. I had an appointment yesterday, and they are planning...

https://connect.mayoclinic.org/comment/843319/

Discussion: Recurrence in Liver after Whipple

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 14, 2023

Hello @fae and welcome to Mayo Connect. I'm glad that you have connected with some of...

https://connect.mayoclinic.org/comment/827197/

Discussion: Lanreotide Manufacturers: anyone have experience with either?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 16, 2023

Hi, I’m so sorry to hear of your diagnosis. I was grade 2, stage 3 when...

https://connect.mayoclinic.org/comment/1247341/

Discussion: Grade 3, poorly differentiated duodenal NET metastasized to liver-

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 28, 2025

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