Neuroendocrine Tumors (NETs) Support Group

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Comments (362)

So glad to find this! Had NET surgery small intestine and mesentery in 2015 after diagnosis...

https://connect.mayoclinic.org/comment/827137/

Discussion: Long Time Survivor With Concerns re Metastasis

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 16, 2023

I had my right colon removed and small intestine removed 6 weeks ago due to chrons...

https://connect.mayoclinic.org/comment/1436511/

Discussion: How do I eat after digestive tract surgery?

Support Group: Digestive Health

Posted: Nov 12, 2025

Thank you for reaching out. I am a patient of Dr. Jason Starr at Mayo in...

https://connect.mayoclinic.org/comment/831954/

Discussion: Anyone treated for NETs at Mayo Clinic in Jacksonville, FL

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 25, 2023

@tgsenn70: I am also NET small intestine primary with liver metastases, diagnosed 10/2022 with 28 day...

https://connect.mayoclinic.org/comment/1282563/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 15, 2025

I understand how you feel ! I’ve done a lot of research , well mostly google...

https://connect.mayoclinic.org/comment/1237685/

Discussion: Diagnosed with NET si-NET Stage 1 Grade 1

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 15, 2025

Dougt - There is a good website you might checked out www.netrf.org (Neuroendocrine Tumor Research Foundation)...

https://connect.mayoclinic.org/comment/1143245/

Discussion: Diet restrictions with Lanreotide?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 17, 2024

Hello @bluebelle and welcome to the NETs support group at Mayo Connect. I wanted to respond...

https://connect.mayoclinic.org/comment/943270/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 6, 2023

Right now I’m being seen at Johns Hopkins. Because of a developing bowel obstruction the procedures...

https://connect.mayoclinic.org/comment/834012/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 29, 2023

The protocol used by most oncologists is based on the National Comprehensive Cancer Network's recommendations, and...

https://connect.mayoclinic.org/comment/802916/

Discussion: What's your NETs treatment and surveillance protocol?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 28, 2023

@blee123: As you are aware, NET patients do not react the same to treatments; but my...

https://connect.mayoclinic.org/comment/1384449/

Discussion: Questions for surgeon-considerations choosing PRRT or surgery

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 1, 2025

My primary was a tumor wrapped around my small intestine, discovered in 2007. I have been...

https://connect.mayoclinic.org/comment/898391/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 19, 2023

Hello @deloris and welcome to the NETs discussion on Mayo Clinic Connect. I see that you...

https://connect.mayoclinic.org/comment/842366/

Discussion: What do I need to know about NETS?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 12, 2023

I was diagnosed with carcinoid in March 2018 when I, too, had a blockage in my...

https://connect.mayoclinic.org/comment/785165/

Discussion: Neuroendocrine tumor in small bowel with lymph nodes involved

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 15, 2022

Hello @merenyc and welcome to the NET support group on Mayo Connect. There are other members...

https://connect.mayoclinic.org/comment/881988/

Discussion: Confused about diagnosis: Carcinoid tumor in rectal area

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 20, 2023

My understanding is a grade 3 of the lung is considered small cell or non small...

https://connect.mayoclinic.org/comment/813610/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 18, 2023

Going for my 3rd injection of 120 mg Lanreotide next week. No facial or lip sores....

https://connect.mayoclinic.org/comment/1119417/

Discussion: Facial and lip sores from lanreotide injections for NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 7, 2024

anet782x, Sorry to hear you have this situation, but glad to hear you’re looking for thoughts...

https://connect.mayoclinic.org/comment/901579/

Discussion: Laparoscopic Possible Open Surgery Resection - Small Bowel NETS

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 24, 2023

Original site small intestine/appendix with first surgery in 2004 (they thought it was an appendicitis but...

https://connect.mayoclinic.org/comment/1233382/

Discussion: How does Alcohol use affect Liver NET?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 10, 2025

Hi Theresa, Thank you for reaching out. Wow. So much has happened. Dr. Stuckey did my...

https://connect.mayoclinic.org/comment/176720/

Discussion: Anyone treated for NETs at Mayo Clinic in Jacksonville, FL

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 8, 2019

@rocket102, the diagnostic process is anxiety inducing even for the most pragmatic. I can understand why...

https://connect.mayoclinic.org/comment/895793/

Discussion: Results from MRI confusing: Is it NETs or not?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 14, 2023

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