Neuroendocrine Tumors (NETs) Support Group

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Comments (260)

@nannybb my pet scan came back clear no other tumors or anything suspicious just the tumor...

https://connect.mayoclinic.org/comment/1430648/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 4, 2025

I'm so glad I read your post just now. I am going to see my surgeon...

https://connect.mayoclinic.org/comment/1430238/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 3, 2025

Sorry the removal was incomplete. My suggestion is ask (insist) to see a NET specialist for...

https://connect.mayoclinic.org/comment/1426993/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 30, 2025

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

@elementalmiss, I'd like to add my welcome. I added your question to the Neuroendocrine Tumors (NETs)...

https://connect.mayoclinic.org/comment/1378363/

Discussion: Atypical Carcinoid Tumor - lower left lobectomy. Radiation questions

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 24, 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 have lung nets.... along with 1 Adenocarcinoma. The top right lobe and parts of the...

https://connect.mayoclinic.org/comment/1323823/

Discussion: Anyone have lung NETs lining your pleura?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 9, 2025

I was told not to worry about it. That is difficult to do. I also have...

https://connect.mayoclinic.org/comment/1274404/

Discussion: Could a mass on adrenal gland be linked to my carcinoid lung tumor?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 4, 2025

@rogo, we share a few similarities. I've also been incorrectly diagnosed with asthma for over 30...

https://connect.mayoclinic.org/comment/1268878/

Discussion: Carcinoid Tumorlets Neuroendocrine tumor/Cell Hyperplasia - DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 28, 2025

@gig666, great question. @jlsgt is right that the term carcinoid is out of favor. Here's some...

https://connect.mayoclinic.org/comment/1235902/

Discussion: Carcinoid NET changed to carcinoma: What's the difference?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 13, 2025

Hi @dougmck Are your lung nodules typical carcinoids, other lung cancer or small benign nodules? DIPNECH?...

https://connect.mayoclinic.org/comment/1206138/

Discussion: Concerns after lobectomy for carcinoid tumor in lung

Support Group: Lung Cancer

Posted: Jan 7, 2025

@cmc188 I don't blame you for not wanting side effects without any benefit. I have had...

https://connect.mayoclinic.org/comment/1206123/

Discussion: Typical Carcinoid Tumor in Lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 7, 2025

They are flushing versus hot flashes. Flushing just turns you red, but you do not sweat....

https://connect.mayoclinic.org/comment/1203269/

Discussion: What does my dentist need to know about my NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 3, 2025

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

Hi , I am 72 . I was diagnosed with Carcinoid tumors all over my lungs....

https://connect.mayoclinic.org/comment/1061171/

Discussion: Describe your recovery from lung NET surgery

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 3, 2024

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

@hopeful33250 Hi Teresa, You are correct that they did not suggest surgery for me. The reason...

https://connect.mayoclinic.org/comment/861413/

Discussion: Net unknown cause of breathing problems

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 17, 2023

Hi tatteesmom3, are you seeing a NETS (neuroendocrine tumor) multidisiciplinary team or just a local oncologist...

https://connect.mayoclinic.org/comment/844936/

Discussion: What do I need to know about NETS?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 18, 2023

Hi @bcraft. I'm new to this site too and what brought me here was a search...

https://connect.mayoclinic.org/comment/838450/

Discussion: New DIPNECH diagnosis, need advice on doctors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 5, 2023

In ‘07 I had a bronchial Carcinoid tumor removed. It is very slow growing but when...

https://connect.mayoclinic.org/comment/831739/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 25, 2023

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