Neuroendocrine Tumors (NETs) Support Group

Public Support Group

Follow for updates

Search discussions

Start a new discussion

984 total results

Comments (904)

I had 2 typical lung carcinoids diagnosed a little over a year ago. One was in...

https://connect.mayoclinic.org/comment/1056209/

Discussion: Lung nodule could be slow growing carcinoid: Watch and wait is scary

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 24, 2024

@aliatl Hi thanks for Reaply, sorry to here about your wife, she got Diogenes last summer...

https://connect.mayoclinic.org/comment/804697/

Discussion: Neuroendocrine Lung stage 4B with metastasis in liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 1, 2023

I do. I had a lung net removed In April. Best guy at Mayo is dr...

https://connect.mayoclinic.org/comment/771380/

Discussion: Anyone gone to Mayo Clinic in Rochester Minnesota for carcinoid tumors?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 9, 2022

I have an Acth producing tumer in lung if any one had similar case what was...

https://connect.mayoclinic.org/comment/803567/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 30, 2023

I have been taking octreotide injections for 4 years for lung NETs and have not had...

https://connect.mayoclinic.org/comment/1207164/

Discussion: Clay colored bowels & diarrhea side effects with Octreotide

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 8, 2025

Hi, I am 76 and have typical 19 mm carcinoid lung net they want to do...

https://connect.mayoclinic.org/comment/1522926/

Discussion: Post surgery for typical carcinoid: Very tired and low energy

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 9 4:32am

Yes surgery soon for lung then checkups every 6 months showed bright on pet scan Thank...

https://connect.mayoclinic.org/comment/873237/

Discussion: Neuroendocrine tumor in small bowel with lymph nodes involved

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 5, 2023

I went out of NETWORK and the area to get a second opinion from a NET...

https://connect.mayoclinic.org/comment/989286/

Discussion: Laparoscopic Possible Open Surgery Resection - Small Bowel NETS

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 31, 2023

@nannybb I honestly have no idea what is causing my pain it's lower lung mainly feels...

https://connect.mayoclinic.org/comment/1442731/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 19, 2025

It can sure be a frustrating journey to diagnosis, can’t it? Glad they figured yours out...

https://connect.mayoclinic.org/comment/1171342/

Discussion: How many doctors did you see to get to your NETS diagnosis?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 10, 2024

Definitely ask for sedation for your biopsy. It's not pleasant. While still on the table while...

https://connect.mayoclinic.org/comment/1080156/

Discussion: Altitude change after lung biopsy/bronchoscopy

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 3, 2024

Yes, the tumor I had ablated was malignant (typical carcinoid). It was biopsied first. The microwave...

https://connect.mayoclinic.org/comment/1208685/

Discussion: Diagnosed with DIPNECH yesterday!

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 10, 2025

@tomrennie My lobectomy surgery to remove the dotatate + typical lung net just got delayed. About...

https://connect.mayoclinic.org/comment/1526433/

Discussion: Previous heart surgery & risks of surgery to remove lung net

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 14 12:15am

Lately, I have started coughing out of the blue for no reason. Has anyone else with...

https://connect.mayoclinic.org/comment/1066295/

Discussion: Describe your recovery from lung NET surgery

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 11, 2024

@californiazebra The lung tumor that grew and they did a needle biopsy on....I'm just wondering what...

https://connect.mayoclinic.org/comment/1432606/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 6, 2025

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

Hi . I have had long nodules for about 8yrs that started growing. Afrrr cat scan,...

https://connect.mayoclinic.org/comment/1553869/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: 1 day ago

I also have NET and DIPNECH. Both were found in August of 2024 when my tumor...

https://connect.mayoclinic.org/comment/1288119/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 23, 2025

I am coughing up blood tinged phlegm every day. This is how it was found. At...

https://connect.mayoclinic.org/comment/1048206/

Discussion: Neuroendocrine cells in Breast and Lungs DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 10, 2024

Hi @gmapam I have lung NETS and have had unrelated diverticulitis several times in the past...

https://connect.mayoclinic.org/comment/883798/

Discussion: Recently diagnosed with a NET in my middle lobe of my right lung.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 23, 2023

Follow

8185

1 hour ago

Visiting Mayo Clinic

Follow

6776

2 hours ago

Cancer: Managing Symptoms

Follow

5669

3 hours ago

Pancreatic Cancer

Follow

3561

4 hours ago

Follow

10055

5 hours ago