Neuroendocrine Tumors (NETs) Support Group

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Comments (362)

I also was diagnosed stage 4 primary in the small intestine and spread to the liver...

https://connect.mayoclinic.org/comment/1391349/

Discussion: Has anyone been diagnosed with neuroendocrine carcinoma?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 11, 2025

According to the article “Multiple Primary Tumors Over a Lifetime” on CancerNetwork.com, “A cancer of a...

https://connect.mayoclinic.org/comment/810100/

Discussion: determination of primary site of NET

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 11, 2023

Hi helloitsme, I'm glad you reached out. We were both very scared about the surgery. It...

https://connect.mayoclinic.org/comment/893237/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 10, 2023

@hopeful33250 Hi, Don't know what to say. The Nurse Practitioner had to contact one of the...

https://connect.mayoclinic.org/comment/1443624/

Discussion: How do I eat after digestive tract surgery?

Support Group: Digestive Health

Posted: Nov 20, 2025

My husband has stage 4 also. Began in small intestine and spread to liver. We are...

https://connect.mayoclinic.org/comment/1415423/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 14, 2025

I also have stage 4 metastasized from small intestine to the liver. On Ocreotide injections for...

https://connect.mayoclinic.org/comment/1408667/

Discussion: 2nd 3 month follow up

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 5, 2025

Hi harley4650, sorry to hear that treatment is not working as hoped. In addition to the...

https://connect.mayoclinic.org/comment/1037432/

Discussion: Treatment for GI NET with liver mets not working: Options?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 20, 2024

Glad to join this group. My tumor on the outside of the small intestine was found...

https://connect.mayoclinic.org/comment/886230/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 27, 2023

Mikhailsapenko, my experience was similar to yours in that I had been in/out of the ER...

https://connect.mayoclinic.org/comment/1194781/

Discussion: Still have symptoms after surgery

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 21, 2024

@panorman3 Maybe the problem isn’t access — it’s the risk involved: 1. Vital blood supply runs...

https://connect.mayoclinic.org/comment/1401977/

Discussion: My carcinoid tumor is inoperable: What are the best ways to control?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 26, 2025

@firepowr if you don’t mind me asking, what have they said about yours that is considered...

https://connect.mayoclinic.org/comment/813521/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 18, 2023

My experience: After discovery in Mar./2023 of a Grade 2, Small intestine NETs that metastasized to...

https://connect.mayoclinic.org/comment/1061064/

Discussion: Updating about My Lanreotide Injections & CT Scan

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 2, 2024

Good morning to (hello it’s me) I was diagnosed Dec. 2022.. started in small intestine and...

https://connect.mayoclinic.org/comment/851326/

Discussion: Just diagnosed: Metastatic NETs. Treatment?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 29, 2023

Dbamos1945 and bubbles 2023 - Dbamos, your response struck a cord with me as your response...

https://connect.mayoclinic.org/comment/885814/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 26, 2023

I don’t want to scare you, but it was painful 5 hour surgery. I was hospitalized...

https://connect.mayoclinic.org/comment/1309905/

Discussion: Primary Small Bowel NETS, Liver Mets

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 21, 2025

Kwan, I had PRRT at Mayo in Phoenix from April - October 2021 for various non-resectable...

https://connect.mayoclinic.org/comment/1060569/

Discussion: Questions Regarding Results after PRRT Treatment

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 1, 2024

Hi @taneall I am in the same boat as your husband...grade 1, stage 4. It is...

https://connect.mayoclinic.org/comment/892998/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 9, 2023

Yes, there is a diagnostic test you can and should have. It's a PT CT Dototate...

https://connect.mayoclinic.org/comment/792451/

Discussion: Neuroendocrine tumor: What tests are used for diagnosis?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 4, 2023

@briana311 I was diagnosed two years ago. The primary was near my small intestine. The biopsy...

https://connect.mayoclinic.org/comment/1530719/

Discussion: NETs growing despite 3 months of capecitabine and temozolomide

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 19 12:17pm

At a week out of surgery, I was not given any dietary restrictions, BUT I have...

https://connect.mayoclinic.org/comment/1371830/

Discussion: Carcinoid cancer: Want to meet others

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 16, 2025

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