Neuroendocrine Tumors (NETs) Support Group

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Comments (878)

@kdubbs Also, you do have Emory University and Winship Cancer Institute there. Because DIPNECH is rare...

https://connect.mayoclinic.org/comment/1532932/

Discussion: DIPNECH dr in GA- Atlanta

Support Group: Neuroendocrine Tumors (NETs)

Posted: 3 days ago

Yes, that was what was recommended. I consulted a surgeon and he also recommended radiation as...

https://connect.mayoclinic.org/comment/943959/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 8, 2023

@bjh369- Hello and welcome to our group. You are right, you just keep on keeping on....

https://connect.mayoclinic.org/comment/232797/

Discussion: Facing Cancer Recurrence, PTSD & Acknowledging Mental Health

Support Group: Cancer: Managing Symptoms

Posted: Jan 7, 2019

Hi I took glp1 ozempic almost 2yrs during this time nets tumor showed up in my...

https://connect.mayoclinic.org/comment/1468586/

Discussion: Are GLP meds associated with growth in PNETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 27, 2025

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

Hello @sydmiller1 and welcome to the NETs support group on Mayo Connect. It appears from your...

https://connect.mayoclinic.org/comment/1333446/

Discussion: High or Fluctuating Chromogranin A Level: What does it mean?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 23, 2025

yes they are just reference Dt. Willin and net team and their patient caregiver presentations are...

https://connect.mayoclinic.org/comment/673631/

Discussion: Feeling discouraged and too many specialists

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 21, 2022

But what does the octreotide do to you? From what I've found when web searching, it...

https://connect.mayoclinic.org/comment/1254930/

Discussion: Typical Carcinoid Tumor in Lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 10, 2025

I see a nets oncologist now. I did have the dotate pet scan and it came...

https://connect.mayoclinic.org/comment/1360087/

Discussion: stage 1A Net removed from upper left lobe

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 30, 2025

Hi there! No, I had the middle lobe of my right lung removed surgically in 2019....

https://connect.mayoclinic.org/comment/1243372/

Discussion: DIPNECH diagnosis. Has anyone had radiation?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 23, 2025

@nannybb yes my lung hurts but I've had pneumonia in that lung also along with partial...

https://connect.mayoclinic.org/comment/1436706/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 12, 2025

Hello @ghassan and welcome to Mayo Connect. I appreciate your sharing about your lung carcinoid. While...

https://connect.mayoclinic.org/comment/134274/

Discussion: Typical Carcinoid Tumor in Lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 25, 2018

Hi, I was diagnosed with carcinoid tumor in my lower left lung, after ct scans, bronchoscopy...

https://connect.mayoclinic.org/comment/975118/

Discussion: Anyone with carcinoid tumors in lung and stomach?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 4, 2023

@nannybb I've had only half of tumor removed in Sept but I've had pneumonia the end...

https://connect.mayoclinic.org/comment/1435894/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 11, 2025

Hello @mhcohan and welcome to the NETs support group on Mayo Clinic Connect. Yes, there are...

https://connect.mayoclinic.org/comment/1415779/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 14, 2025

Hello @ineedawhale and welcome to the NETs support group on Mayo Connect. On Connect, we have...

https://connect.mayoclinic.org/comment/1357814/

Discussion: Initial imaging and tests; what to expect after initial NETs diagnosis

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 27, 2025

@pammy229 I appreciate the added information on your recent lung NET diagnosis. I'll invite some other...

https://connect.mayoclinic.org/comment/1198262/

Discussion: Any advice for someone recently diagnosed with NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 27, 2024

@breck, Here is a discussion group on Connect that you might find helpful. Here you will...

https://connect.mayoclinic.org/comment/1169616/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 7, 2024

@nannybb mine is sharp when I take deep breaths but my lung is achey constantly ive...

https://connect.mayoclinic.org/comment/1447902/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 26, 2025

@jessie1990 Yes, that will do it. I had a partially collapsed lung after my biopsy and...

https://connect.mayoclinic.org/comment/1435900/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 11, 2025

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