Neuroendocrine Tumors (NETs) Support Group

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Comments (933)

I have NET metastasis liver cancer I have been told by 3 drs that they don’t...

https://connect.mayoclinic.org/comment/835279/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 31, 2023

Hello @larrym62, and welcome to the NETs support group on Mayo Connect. I appreciate you sharing...

https://connect.mayoclinic.org/comment/1461302/

Discussion: Anyone else get bloating and abdominal pain from NETS or Lanreotide?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 15, 2025

My Journey of what I have done Liver resection Lanreotide Octreotide Liver embolizations both sides Afinitor...

https://connect.mayoclinic.org/comment/1328140/

Discussion: First scan after 3 months of lanreotidec

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 16, 2025

This August, I will have been on Lanreotide injections for 2 years and eating frequently, but...

https://connect.mayoclinic.org/comment/1297333/

Discussion: First Lanreotide Injection: Any tips about diet and side effects?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 5, 2025

My husband was diagnosed with stage four grade 2 NET in October 2022. He had a...

https://connect.mayoclinic.org/comment/1213981/

Discussion: Anyone had a large NET in the liver? What treatment did you have?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 15, 2025

Hello @ricki8 I'm glad to hear that everything seems to be normalized now and that your...

https://connect.mayoclinic.org/comment/921293/

Discussion: Laparoscopic Possible Open Surgery Resection - Small Bowel NETS

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 30, 2023

My husband has been on CAP and TEM and also a monthly injection of lanreotide for...

https://connect.mayoclinic.org/comment/885058/

Discussion: Looking for information on CAPTEM treatment

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 25, 2023

@billyfeet - I had the same surgery on Feb.1 2023. ( plus hysterectomy, which made it...

https://connect.mayoclinic.org/comment/854257/

Discussion: New diagnosis of NET: What should I know and do to plan?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 4, 2023

Lanreotide has been part of my NET journey for 3+ years and I agree that some...

https://connect.mayoclinic.org/comment/1455572/

Discussion: Anyone else get bloating and abdominal pain from NETS or Lanreotide?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 7, 2025

Hi mama neuroendocrine, it sound like you’re on a similar path of hope in managing this...

https://connect.mayoclinic.org/comment/953639/

Discussion: Metastatic NeuroEndocrine Grade 3 - ki 80% -

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 25, 2023

My dear! Hugs and strength to you is my wish! I cannot say about fasting before...

https://connect.mayoclinic.org/comment/1061273/

Discussion: Updating about My Lanreotide Injections & CT Scan

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 3, 2024

Note: I am not a doctor - Yes, octreotide injections are much faster, however, the injector...

https://connect.mayoclinic.org/comment/1428265/

Discussion: PET Ga-68 Dodatate Scan & Octreotide LAR Injections

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 1, 2025

I'm in the same boat. Well differentiated, had small bowel resection, still have a mass and...

https://connect.mayoclinic.org/comment/1236191/

Discussion: I recently had surgery to remove NET in small intestine

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 13, 2025

Thank goodness the others have given you the best advice. If I had not persisted in...

https://connect.mayoclinic.org/comment/985015/

Discussion: Should I see a NET specialist?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 22, 2023

My wife was diagnosed with NET in April 2022, with mass on tail of pancreas, and...

https://connect.mayoclinic.org/comment/797689/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 16, 2023

Hello @hopefullilly and welcome to Mayo Connect. I'm sorry to hear about the problem you had...

https://connect.mayoclinic.org/comment/1404169/

Discussion: Lanreotide shot given too fast, any side effects?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 29, 2025

Hi everyone, First I would like to thank everyone for their help. It sure sounds like...

https://connect.mayoclinic.org/comment/1389775/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 8, 2025

I should mention that my primary (origin) started in the small bowel and metastasized into my...

https://connect.mayoclinic.org/comment/1227757/

Discussion: Histotripsy near St. Louis

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 2, 2025

@billbo: I have Neuroendocrine cancer primary tumor small intestine (duodenum junction) that metastasized to liver. When...

https://connect.mayoclinic.org/comment/1553235/

Discussion: Anyone had PRRT treatment for liver metastasis NETS?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 18 1:38am

Hello, how long since you were originally diagnosed with NETs? I am trying to determine what...

https://connect.mayoclinic.org/comment/952977/

Discussion: Liver Transplant to Treat NETs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 24, 2023

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