Neuroendocrine Tumors (NETs) Support Group

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Comments (653)

I have only had the every 28 day injections I did lanreotide for 3 months (3...

https://connect.mayoclinic.org/comment/820017/

Discussion: Lanreotide Manufacturers: anyone have experience with either?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 2, 2023

@nvent5 Hi. For DIPNECH and typical carcinoids, I'm being treated at UCLA by the multi-disciplinary NETs...

https://connect.mayoclinic.org/comment/1526189/

Discussion: What is the surveillance protocol for typical pulmonary NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 13 3:45pm

Hi Bob and Welcome! I read your other post regarding your insulinoma metastasis to the liver....

https://connect.mayoclinic.org/comment/806558/

Discussion: Pancreatic NETs: Looking to connect with anyone with insulinoma

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 5, 2023

Thanks for your reply. It has helped. What you say makes sense. I want to figure...

https://connect.mayoclinic.org/comment/1385978/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 3, 2025

I take Octreotide injection SQ three times per day. It has a similar side effect profile...

https://connect.mayoclinic.org/comment/1022152/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 25, 2024

Hi Teresa, Thanks for your concern and prayers. Yes, it will be a liver resection. The...

https://connect.mayoclinic.org/comment/637391/

Discussion: Possible NET with No Evidence of Tumor: Mediastinal Mass

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 20, 2021

I also have been diagnosed with liver NETS here in Panama. My oncologist started me on...

https://connect.mayoclinic.org/comment/1539378/

Discussion: Does anyone have neuroendocrine small cell carcinoma of the liver?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 31 8:18am

Kwan: Based on our own experiences dealing exclusively with NET's: There may be cases in which...

https://connect.mayoclinic.org/comment/969303/

Discussion: Octreotide Injections - Skipping One or More?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 22, 2023

I also have Carcinoid Syndrome, PET scan shows it started in the small intestines and metastasized...

https://connect.mayoclinic.org/comment/878862/

Discussion: Where can I find a carcinoid syndrome specialist in Florida?!

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 15, 2023

Thank you so much for your reply! The oncologist made me aware that DIPNECH is a...

https://connect.mayoclinic.org/comment/772281/

Discussion: Carcinoid Tumorlets Neuroendocrine tumor/Cell Hyperplasia - DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 12, 2022

I was on lanreotide now on octreotide and yesterday my MRI showed my tumors are still...

https://connect.mayoclinic.org/comment/741450/

Discussion: Treatments for Carcinoids

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 25, 2022

Thank you for the detailed description, already feeling less stressed. I’ve done a lot of reading...

https://connect.mayoclinic.org/comment/1339250/

Discussion: PRRT side effects and results

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 1, 2025

@lisaonthegoco I'm so sorry that you've had to deal with this for so long and told...

https://connect.mayoclinic.org/comment/1556870/

Discussion: Diagnosed with DIPNECH yesterday!

Support Group: Neuroendocrine Tumors (NETs)

Posted: 5 days ago

In January I was diagnosed with NETs in my stomach. My GI doctor said I had...

https://connect.mayoclinic.org/comment/835868/

Discussion: Anyone have a stomach NET?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 1, 2023

I have never had symptoms. My NET's were discovered accidentally during a CT scan when they...

https://connect.mayoclinic.org/comment/1522305/

Discussion: Diagnosis Frustrated: How you were diagnosed with NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 8 9:21am

@dbjoyce Agree! I had a small bowel obstruction in 2022, pathology confirmed SB NETS & 4...

https://connect.mayoclinic.org/comment/1556240/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: 6 days ago

The same week I met with the Dr at Dana Farber the first of September 2022...

https://connect.mayoclinic.org/comment/885611/

Discussion: Feeling discouraged and too many specialists

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 26, 2023

The lanreotide and octreotide injections can be a little painful during the injection but side effectss...

https://connect.mayoclinic.org/comment/1439051/

Discussion: What is the best treatment for carcinoid tumor in mesentery?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 15, 2025

Hello @sandy23, The person who recently mentioned bone METs is @jenntx10. I hope that she will...

https://connect.mayoclinic.org/comment/775596/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 20, 2022

I too have NET alongside my colon. So far the doctor is not suggesting any surgery....

https://connect.mayoclinic.org/comment/748637/

Discussion: Treatments for Carcinoids

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 12, 2022

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