Neuroendocrine Tumors (NETs) Support Group

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Comments (721)

Hi I'm new to this group I also have lung nets in both lungs on the...

https://connect.mayoclinic.org/comment/1328498/

Discussion: Anyone have lung NETs lining your pleura?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 16 2:10pm

Thank you for reply, I don't have a net's team, I rely on my thoracic surgeon...

https://connect.mayoclinic.org/comment/1142739/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 17, 2024

@melmangen, might Mayo Clinic in Jacksonville, Florida be an option for you? Mayo Clinic, Florida has...

https://connect.mayoclinic.org/comment/753620/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 25, 2022

Hi @dak10 and @mimmy. Thank you for sharing your lung NETs info. I also have typical...

https://connect.mayoclinic.org/comment/835869/

Discussion: Newly diagnosed-Primary Malignant Neuroendocrine of Lung

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 1, 2023

Hello @amd12 You mentioned in your last post that you would be having another scan to...

https://connect.mayoclinic.org/comment/792439/

Discussion: Pancreatic NF-NET stable since 2005 - surgery or not?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 4, 2023

@jukebox42 Sorry you feel stressed. Is this a new diagnosis for you? I posted about octreotide...

https://connect.mayoclinic.org/comment/1254968/

Discussion: Typical Carcinoid Tumor in Lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 10 4:47pm

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

Hi @ce1b -- I think you have a great attitude. I agree with your thoughts. Is...

https://connect.mayoclinic.org/comment/861470/

Discussion: Net unknown cause of breathing problems

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 17, 2023

@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

Thank you Colleen. They have done following tests in order below Xray - saw a mass...

https://connect.mayoclinic.org/comment/794480/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 9, 2023

Hi @splendrous 2008-2010: they didn't know what the 50+ nodules were, benign or cancer, so many...

https://connect.mayoclinic.org/comment/1179339/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 24, 2024

I had a lung biopsy about four years ago. The procedure itself was pretty easy and...

https://connect.mayoclinic.org/comment/1079934/

Discussion: Altitude change after lung biopsy/bronchoscopy

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 3, 2024

I had all the NET at a before being diagnosed, probably for 5 years they CAT...

https://connect.mayoclinic.org/comment/1057160/

Discussion: Flushing with NETS lung cancer?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 25, 2024

Thanks so much for the info. Hope the surgery and recovery go as smoothly as possible....

https://connect.mayoclinic.org/comment/1079563/

Discussion: Altitude change after lung biopsy/bronchoscopy

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 2, 2024

What type of NET do you have and where is it located? I have Typical Lung...

https://connect.mayoclinic.org/comment/1251272/

Discussion: Anyone have side effects after Lanreotide injection?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 5 5:27pm

Hey Teresa, it looks like we were writing at the same time :) Here's some information...

https://connect.mayoclinic.org/comment/134263/

Discussion: Typical Carcinoid Tumor in Lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 17, 2017

My dipnech was also found by chance, I had fallen down some steps and landed on...

https://connect.mayoclinic.org/comment/1143736/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 18, 2024

How high is too high for Chromogranin A? Mine was 2590 and urine 5-HIAA, somatostatin level...

https://connect.mayoclinic.org/comment/893988/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 11, 2023

Also be aware of chest pain and shortness of breath. I thought I was having a...

https://connect.mayoclinic.org/comment/1328192/

Discussion: Blood Clots, DVT and Neuroendocrine Cancer - Be aware.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 16 8:20am

Your case sounds almost like mine. My lung tumor is rarely mentioned & the focus seems...

https://connect.mayoclinic.org/comment/1056351/

Discussion: Updating about My Lanreotide Injections & CT Scan

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 24, 2024

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