Neuroendocrine Tumors (NETs) Support Group

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Comments (240)

That's amazing ! I feel very blessed an encouraged by this,The largest nodule in my lung...

https://connect.mayoclinic.org/comment/1330481/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 19, 2025

Ps- my symptoms primarily are shortness of breath on exertion, like climbing stairs a lot or...

https://connect.mayoclinic.org/comment/1209863/

Discussion: Diagnosed with DIPNECH yesterday!

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 12, 2025

I’m glad your allergies have improved and general wellness. I did allergy testing about 25 years...

https://connect.mayoclinic.org/comment/1330239/

Discussion: DIPNCEH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 18, 2025

That’s great it improved your allergies! In my allergy testing, it looked like I was allergic...

https://connect.mayoclinic.org/comment/1330268/

Discussion: DIPNCEH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 18, 2025

Hi - I’m new here. But I saw your question. I was diagnosed this summer with...

https://connect.mayoclinic.org/comment/974003/

Discussion: Anyone had surgery to remove typical carcinoids of the lung?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 2, 2023

Hello @marciamiller and welcome to Mayo Connect. I am glad that you found this forum. DIPNECH...

https://connect.mayoclinic.org/comment/1163824/

Discussion: Anyone have side effects after Lanreotide injection?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 28, 2024

You are a delight! I love your enthusiasm and your sense of humor. I always wanted...

https://connect.mayoclinic.org/comment/1431879/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 6, 2025

May I refer to you as California? Thank you for your input. My first lobectomy was...

https://connect.mayoclinic.org/comment/1224839/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 29, 2025

Your English is great and your story was easy to follow. Definitely do all the monitoring...

https://connect.mayoclinic.org/comment/1237831/

Discussion: Diagnosed with NET si-NET Stage 1 Grade 1

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 15, 2025

Great explanation! I also have both, but not needing treatment at this point. It can be...

https://connect.mayoclinic.org/comment/1411054/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 8, 2025

It is interesting, isn’t it? However, I didn’t have those allergy symptoms like sneezing, etc. several...

https://connect.mayoclinic.org/comment/1205467/

Discussion: Typical Carcinoid Tumor in Lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 6, 2025

Hi @peggymariejackson as I mentioned in another one of your posts, I have lung NETs --...

https://connect.mayoclinic.org/comment/861009/

Discussion: Dying from car accident can cause death more so this cancer

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 17, 2023

@woundedwarrior1969 Your philosophy certainly may be true for some disorders. In the case of DIPNECH the...

https://connect.mayoclinic.org/comment/965985/

Discussion: Anyone had surgery to remove typical carcinoids of the lung?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 16, 2023

Hi @pammy229 I’m glad you decided to go to Mayo and will undoubtedly be hooked up...

https://connect.mayoclinic.org/comment/1198299/

Discussion: Any advice for someone recently diagnosed with NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 27, 2024

I has dx’d with DIPNECH last fall after having my right middle lobe removed for 1...

https://connect.mayoclinic.org/comment/1143500/

Discussion: Anyone living long-term with DIPNECH on lungs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 18, 2024

Sorry your going through this. Thanks for your response. If you do not mind, I would...

https://connect.mayoclinic.org/comment/1055029/

Discussion: New DIPNECH diagnosis, need advice on doctors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 22, 2024

Hi @pattirushing It's a little bit hard for me to single out all the octreotide side...

https://connect.mayoclinic.org/comment/838730/

Discussion: New DIPNECH diagnosis, need advice on doctors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 6, 2023

It was very helpful and encouraging to read your comments . I have not met or...

https://connect.mayoclinic.org/comment/845625/

Discussion: New DIPNECH diagnosis, need advice on doctors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 19, 2023

Hi , welcome to the DIPNECH club 🥴. You’ve come to the right place! I also...

https://connect.mayoclinic.org/comment/1392355/

Discussion: Biopsy showed DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 12, 2025

Dr. Gaetano Rocco. He’s a thoracic surgeon, but he knew all about NETS and DIPNECH. I...

https://connect.mayoclinic.org/comment/1244665/

Discussion: DIPNECH diagnosis. Has anyone had radiation?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 24, 2025

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