Neuroendocrine Tumors (NETs) Support Group

Public Support Group

Follow for updates

Search discussions

Start a new discussion

455 total results

Comments (400)

My husband was diagnosed with GI tract stage 4 Neuroendocrine carcinoid tumor March,2022. He had surgery...

https://connect.mayoclinic.org/comment/1048670/

Discussion: Questions Regarding Results after PRRT Treatment

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 10, 2024

Hi Colleen. I was have Nets in my cecum, small intestines, lymph nodes, liver and heart....

https://connect.mayoclinic.org/comment/971488/

Discussion: Should NET w/liver met patient stop rx that has Seratonin?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 28, 2023

@fraaseo I live in Far North Qld Australia. I found out in 2021 I had net...

https://connect.mayoclinic.org/comment/1402161/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 26, 2025

Hi Eileen; I’m sure you’re in complete shock with your diagnosis. Your case sounds a lot...

https://connect.mayoclinic.org/comment/1284362/

Discussion: New To NETS - Stage 4 / Grade 1

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 18, 2025

Patrick, I would like to know more about your regimen and diet. I was diagnosed this...

https://connect.mayoclinic.org/comment/776233/

Discussion: Prognosis for Metastasized NET

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 22, 2022

I was diagnosed with NET's in my Liver back in December 2022, started Lanreodide for a...

https://connect.mayoclinic.org/comment/1539459/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 31 9:33am

@kevinmonroemi thank you for sharing. I have functional Gastrinoma PNET at head of pancreas removed in...

https://connect.mayoclinic.org/comment/1542508/

Discussion: Started PRRT treatment: Anyone experience tumor markers increasing?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 4 8:51am

@tgsenn70 I am new here; I hope this reply works. We went with Y90 procedure because...

https://connect.mayoclinic.org/comment/1529993/

Discussion: Liver NETs: Anyone has extreme swelling in feet and ankles?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 18 2:00pm

My condition is similar stage 4 due to it metastasizing to the liver, origin is the...

https://connect.mayoclinic.org/comment/1106025/

Discussion: Diagnosed with Stage 4 pancreatic neuroendocrine metastasized to liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 15, 2024

Did you read something or did someone advise your son against eating beef? I'm not a...

https://connect.mayoclinic.org/comment/969833/

Discussion: Octreotide Injections - Skipping One or More?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 24, 2023

My husband’s journey started In 2015 with stomach pains nothing diagnosed. Then in 2019 he was...

https://connect.mayoclinic.org/comment/1121892/

Discussion: Pancreastatin level at 1500

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 11, 2024

Thank you for your information of how your PNET was handled. While I am sure surgery...

https://connect.mayoclinic.org/comment/1354581/

Discussion: NET tumor of pancreas (1 cm) diagnosed

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 23, 2025

Might I suggest you get a 2nd opinion? It's just a thought. Also, possibly speak with...

https://connect.mayoclinic.org/comment/1072193/

Discussion: Spreading NET

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 21, 2024

Hi I feel every bite of your trails I traveled almost the same road , misdiagnosed...

https://connect.mayoclinic.org/comment/792778/

Discussion: Frustrated with the medical establishment

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 5, 2023

Since my diagnosis in 2002 at Mayo Clinic, I have had surgery to remove appendix, gallbladder,...

https://connect.mayoclinic.org/comment/137542/

Discussion: My Husband was newly diagnosed with Carcinoid Cancer

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 15, 2017

Hello @joy5877 and welcome to the NETs support group on Mayo Connect. I'm pleased that you...

https://connect.mayoclinic.org/comment/940369/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 2, 2023

Yes I have had one discovered about two years ago with a heart MRI. It was...

https://connect.mayoclinic.org/comment/907604/

Discussion: Has anyone had NETs metastasized to heart?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 4, 2023

Hi Carrie! I am do sorry to hear your news and I completely empathize with your...

https://connect.mayoclinic.org/comment/1073202/

Discussion: Neuroendocrine Carcinoma with Liver Metastasis

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 23, 2024

Hi anyone with NETS recurrence? I had laparoscopy surgery to remove the tumor from my small...

https://connect.mayoclinic.org/comment/1255264/

Discussion: New Diagnosis: husband's labs are all indicating NET

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 11, 2025

I guess I should introduce myself before I answer people. I am a NET patient at...

https://connect.mayoclinic.org/comment/176729/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 19, 2019

1
…
17
18
19
20

Melanoma & Skin Cancer

Follow

1449

38 minutes ago

Pancreatic Cancer

Follow

3896

41 minutes ago

Digestive Health

Follow

19852

3 hours ago

Follow

8957

4 hours ago

Visiting Mayo Clinic

Follow

7404

6 hours ago