Neuroendocrine Tumors (NETs) Support Group

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Comments (240)

Hi @tatteesmom3 , I see a thoracic oncologist who is part of a NETS team at...

https://connect.mayoclinic.org/comment/854004/

Discussion: What do I need to know about NETS?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 3, 2023

@nannybb I’ve read all of your responses, but I did not see a previous one regarding...

https://connect.mayoclinic.org/comment/1431871/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 5, 2025

Good to know. Just frustrating that no one ever suggested the SOB on exertion was related...

https://connect.mayoclinic.org/comment/1108851/

Discussion: DIPNECH (diffuse idiopathic pulmonary neuroendocrine cell hyperplasia)

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 20, 2024

I live within reach of Memorial Sloan Kettering so called just to get a 2nd opinion....

https://connect.mayoclinic.org/comment/1087269/

Discussion: On choosing a surgeon for pulmonary carcinoid resection…

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 15, 2024

Hi @josey1 Sorry about all that you are going through. I have both DIPNECH and typical...

https://connect.mayoclinic.org/comment/906758/

Discussion: New DIPNECH diagnosis, need advice on doctors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 3, 2023

Hi @triveraderubio and others with DIPNECH and Lung NETs. I hope the octreotide is working for...

https://connect.mayoclinic.org/comment/834726/

Discussion: Carcinoid Tumorlets Neuroendocrine tumor/Cell Hyperplasia - DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 30, 2023

@peggymariejackson @hopeful33250 @sherikayb @debbieguk @ce1b I see some of you have lung NETs, some GI NETs,...

https://connect.mayoclinic.org/comment/861008/

Discussion: Net unknown cause of breathing problems

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 17, 2023

Hi! I’m in VA but will be going to Duke at some point to see an...

https://connect.mayoclinic.org/comment/1393984/

Discussion: Biopsy showed DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 15, 2025

@annie12345 Typical carcinoids are not from smoking (smokers get atypical carcinoids). Nothing you did. My brother...

https://connect.mayoclinic.org/comment/1330066/

Discussion: Any one with Neuroendocrine tumors getting the shot once a month?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 18, 2025

@nannybb I always had asthma when I was sick or exposed to many animals. Then in...

https://connect.mayoclinic.org/comment/1432474/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 6, 2025

Hello Teresa, If I had a minimal uptake 2.1 SUV 1cm tumor (multiple other had no...

https://connect.mayoclinic.org/comment/1024566/

Discussion: 68Ga DOTATATE Positron Emission Tomography (PET) at Mayo Clinic

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 28, 2024

Hi @aclanton @terradean My largest 2.6 cm tumor was destroyed with microwave ablation. Not a fun...

https://connect.mayoclinic.org/comment/1076548/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 28, 2024

@netnan I also have lung NETs (atypical carcinoids) and DIPNECH with 50+ tumors scattered across both...

https://connect.mayoclinic.org/comment/1107096/

Discussion: Sarcoidosis and Lung NET, upcoming surgery

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 17, 2024

Hi I was just diagnosed last week with both DIPNECH and NETS. I am out near...

https://connect.mayoclinic.org/comment/1393934/

Discussion: Biopsy showed DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 15, 2025

I’ve had my first significant change recently. 3 months ago it looked like I had a...

https://connect.mayoclinic.org/comment/1223495/

Discussion: Already on oxygen - diagnosed with DIPNECH: What happens next?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 28, 2025

Hi @mimi206 I have DIPNECH and lung NETs (typical carcinoids) with 50+ nodules so we are...

https://connect.mayoclinic.org/comment/1250591/

Discussion: DIPNECH diagnosis. Has anyone had radiation?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 4, 2025

It has probably been close to 10 years since DIPNECH was suspected in me. In the...

https://connect.mayoclinic.org/comment/881201/

Discussion: Should I see a NET specialist?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 19, 2023

I take octreotide injections for lung NETs and DIPNECH to control respiratory symptoms (works great) and...

https://connect.mayoclinic.org/comment/1346205/

Discussion: Any one with Neuroendocrine tumors getting the shot once a month?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 11, 2025

Hello @gprior, I understand your interest in reading about how others have treated DIPNECH. You mentioned...

https://connect.mayoclinic.org/comment/1223548/

Discussion: Already on oxygen - diagnosed with DIPNECH: What happens next?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 28, 2025

I think you hit the nail on the head with the workaround. That being said, I...

https://connect.mayoclinic.org/comment/1126890/

Discussion: Lanreotide eventually becomes less effective, why?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 19, 2024

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