Neuroendocrine Tumors (NETs) Support Group

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Comments (461)

I guess this is the end of the run on PRRT. I have lung nets with...

https://connect.mayoclinic.org/comment/257060/

Discussion: Interested in hearing people's experiences with PRRT

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 14, 2021

@tomrennie Typical and atypical grading only applies to lung NETs. I feel like GI and lung...

https://connect.mayoclinic.org/comment/1430632/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 4, 2025

There are many other threads going on lung NETs and DIPNECH. If you use the search...

https://connect.mayoclinic.org/comment/1285781/

Discussion: I am 75 and have carcinoid tumors NET in lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 20, 2025

I have lung nets also. Had sbrt radiation for 2 of them and started sandostatin injections...

https://connect.mayoclinic.org/comment/939674/

Discussion: Atypical Lung NET treated with radiation: What was your outcome?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 1, 2023

Know that surgery is considered the “gold standard” treatment for lung NETs. You want it out...

https://connect.mayoclinic.org/comment/899337/

Discussion: Newly diagnosed High-Grade Neuroendocrine Lung Carcinoma

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 20, 2023

@emilyfaith Thank you so much for sharing Emily. I'm very happy you have found a specialist...

https://connect.mayoclinic.org/comment/1585647/

Discussion: Describe your recovery from lung NET surgery

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 28 8:34pm

Hi I'm new to this group I also have lung nets in both lungs on the...

https://connect.mayoclinic.org/comment/1328498/

Discussion: Anyone have lung NETs lining your pleura?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 16, 2025

Hi @blm1024 Welcome! Glad you’re in the other side of surgery. I have typical lung carcinoids...

https://connect.mayoclinic.org/comment/1350349/

Discussion: Carcinoid cancer: Want to meet others

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 17, 2025

I think you would be making another trip. I’d call and inquire. Your surgeron team should...

https://connect.mayoclinic.org/comment/772109/

Discussion: Might we have to Travel Twice to Mayo?

Support Group: Visiting Mayo Clinic

Posted: Nov 11, 2022

You definitely need to get a second opinion from a NETs specialist. Other types of lung...

https://connect.mayoclinic.org/comment/1242687/

Discussion: DIPNECH diagnosis. Has anyone had radiation?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 22, 2025

Hi, I also had a 10 cm lung NET (lobectomy in 2020, no spread to nodes),...

https://connect.mayoclinic.org/comment/1392999/

Discussion: Anyone have a small pancreatic IPMN cyst that turned out to be cancer?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 13, 2025

Hi @josey1 I responded to your other post as I have DIPNECH, lung NETs and breast...

https://connect.mayoclinic.org/comment/906759/

Discussion: Neuroendocrine cells in Breast and Lungs DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 3, 2023

What type of NETs do you have? Are you currently taking the shots and having issues?...

https://connect.mayoclinic.org/comment/1417947/

Discussion: Have Octreotide shots helped you?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 18, 2025

Hello @californiazebra, I really appreciate the chronology that you provided as you have been dealing with...

https://connect.mayoclinic.org/comment/1179350/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 24, 2024

77 years old, female, no symptoms still being diagnosed. Tumor in left lower lung and left...

https://connect.mayoclinic.org/comment/1022376/

Discussion: Carcinoid tumor right middle lobe.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 25, 2024

Is the endometrium cancer NETs? If not, I’m not sure how they would be related unless...

https://connect.mayoclinic.org/comment/1223490/

Discussion: Relationship between endometrium cancer and DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 28, 2025

Okay. Please update us when you know more details. In the meantime, know that lung NETs...

https://connect.mayoclinic.org/comment/1263033/

Discussion: Neuroendocrine cell tumor

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 20, 2025

@rachismarie Sorry to hear about all you’re going thru. I understand how scary it can all...

https://connect.mayoclinic.org/comment/1181823/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 29, 2024

Hi @dak10 and @mimmy. Thank you for sharing your lung NETs info. I also have typical...

https://connect.mayoclinic.org/comment/835869/

Discussion: Newly diagnosed-Primary Malignant Neuroendocrine of Lung

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 1, 2023

I just watched lunch with docs on YouTube from CCF carcinoid cancer foundation with Robert Ramirez...

https://connect.mayoclinic.org/comment/1417594/

Discussion: DO I need 2 teams if I have both Nets-lung and DIPNECH?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 17, 2025

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