Neuroendocrine Tumors (NETs) Support Group

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Comments (368)

My tumors started in the small intestine and metastasized to the liver before I was diagnosed....

https://connect.mayoclinic.org/comment/1072655/

Discussion: Flushing with NETS lung cancer?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 22, 2024

Question… I am having surgery the first week of November to remove roughly 12 inches of...

https://connect.mayoclinic.org/comment/764338/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 23, 2022

@vinnie694: to Vinnie and others on Lutathera PRRT infusions for NET tumor progression! I had Lutathera...

https://connect.mayoclinic.org/comment/1284269/

Discussion: NET in jejunum spread to liver: Treatment options?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 17, 2025

thanks for the suggestions. I checked the info on Creon and I am on Allopurinol for...

https://connect.mayoclinic.org/comment/1118272/

Discussion: Everolimus for multiple Neuroendocrine tumors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 5, 2024

My husband was diagnosed 2 years ago after finding a 2” tumor pressing on his spinal...

https://connect.mayoclinic.org/comment/885643/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 26, 2023

@rkklinger Thank you for your reply. My cancer is similar in that I first had a...

https://connect.mayoclinic.org/comment/1450639/

Discussion: Anyone had positive results from Lanreotide injections?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 1, 2025

I've had NETs of the small intestine (Mesentery) for many years. Let me offer this hypothetical:...

https://connect.mayoclinic.org/comment/1348269/

Discussion: What's next after SiNETS?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 14, 2025

Thanks for sharing, my experience was very similar (see below) additionally they removed the right side...

https://connect.mayoclinic.org/comment/1236619/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 14, 2025

Just went to the first oncologist appointment. After my doctor discussed with the hospital tumor board...

https://connect.mayoclinic.org/comment/812004/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 15, 2023

Just scared, nervous, you know all the emotions. I wonder how long I will in the...

https://connect.mayoclinic.org/comment/750910/

Discussion: Just got the news… stage 2 Carcinoid tumors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 17, 2022

@fraaseo I am also Stage 2, Grade 4 small intestine metastasized to my liver with multiple...

https://connect.mayoclinic.org/comment/1418686/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 19, 2025

Hello @jlsgt and welcome to the NETs support group on Mayo Connect. NETs are a rare...

https://connect.mayoclinic.org/comment/1106357/

Discussion: NETS Mesentery, Small Bowel Resection, Lanreotide, Octreotide, Story

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 16, 2024

I've had 9 months of Lanreotide treatment every 28 days. It started in my small intestine...

https://connect.mayoclinic.org/comment/1427974/

Discussion: NETs with Liver metastasis: starting lanreotide injections

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 31, 2025

I’m so sorry to hear your mother is having these terrible symptoms, , I’m 61 and...

https://connect.mayoclinic.org/comment/940275/

Discussion: Mother might have neuroendocrine tumors, is being told she has IBS

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 2, 2023

I had surgery in 2007 when they found the tumor. They removed it, along with most...

https://connect.mayoclinic.org/comment/898942/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 20, 2023

"How much was removed did they reconnect, did you wear a colostomy bag?" They removed approximately...

https://connect.mayoclinic.org/comment/1312645/

Discussion: Any one have experience with Dr J Maxwell (surgical oncologist) at MD

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 25, 2025

I’m home now after surgery and 8 nights in hospital, mostly in the ICU. It was...

https://connect.mayoclinic.org/comment/844203/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 16, 2023

I have had two surgeries for nets. The first was in my small intestine, so had...

https://connect.mayoclinic.org/comment/875909/

Discussion: Treatments for Carcinoids

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 10, 2023

I have a reoccurrence of NETs. One by small intestine and another in the liver. I’m...

https://connect.mayoclinic.org/comment/1467173/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 24, 2025

I had 12" of my small intestine removed 12 years ago because of carcinoid tumors, at...

https://connect.mayoclinic.org/comment/752921/

Discussion: Just got the news… stage 2 Carcinoid tumors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 23, 2022

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