Neuroendocrine Tumors (NETs) Support Group

Public Support Group

Follow for updates

Search discussions

Start a new discussion

297 total results

Comments (269)

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

Good plan to see a NETs team. DIPNECH is rare. Latest data I’ve read is 300...

https://connect.mayoclinic.org/comment/1108887/

Discussion: DIPNECH (diffuse idiopathic pulmonary neuroendocrine cell hyperplasia)

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 20, 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

Most people have replied about CgA. I live in Uk and have grade 1, small bowel...

https://connect.mayoclinic.org/comment/1091150/

Discussion: What is a normal range for Chromogranin A test? Mine was 99 in 2021.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 21, 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

Hi @rogo It seems like we’ve communicated in the past. I have DIPNECH and lung NETs...

https://connect.mayoclinic.org/comment/1070950/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 19, 2024

Yes, it is scary. Waiting, making the decision. I have Nets. in both of my lungs....

https://connect.mayoclinic.org/comment/1061631/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 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

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

@auntiemum, I've added your discussion to the Neuroendocrine Tumors (NETs) Support Group as well. See a...

https://connect.mayoclinic.org/comment/1045834/

Discussion: Atypical carcinoid tumour of the lung

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 5, 2024

Is there a pet scan That cat scan the body to see if there are any...

https://connect.mayoclinic.org/comment/1022418/

Discussion: Anyone else get bloating and abdominal pain from NETS or Lanreotide?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 25, 2024

Hi @nana120 I believe your hair loss will stabilize. My hair has really thinned due to...

https://connect.mayoclinic.org/comment/1008942/

Discussion: Anyone have hair loss with lanreotide?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 3, 2024

@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

@triveraderubio I had to go back and read through this entire thread to remember what you...

https://connect.mayoclinic.org/comment/962925/

Discussion: Carcinoid Tumorlets Neuroendocrine tumor/Cell Hyperplasia - DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 11, 2023

Hello I too have a NET tumor on my left lung that has metastasized to my...

https://connect.mayoclinic.org/comment/955119/

Discussion: Newly diagnosed-Primary Malignant Neuroendocrine of Lung

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 28, 2023

Hello, I am new to the site and I was diagnosed with a NET in the...

https://connect.mayoclinic.org/comment/916801/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 21, 2023

Hi @mir123 Thanks for sharing your info. I understand there is little historical info to go...

https://connect.mayoclinic.org/comment/909352/

Discussion: Neuroendocrine cells in Breast and Lungs DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 8, 2023

My primary was a tumor wrapped around my small intestine, discovered in 2007. I have been...

https://connect.mayoclinic.org/comment/898391/

Discussion: First Lanreotide Injection: Any tips about diet and side effects?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 19, 2023

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

Welcome, @sandip. I moved your message to this existing discussion: - Neuroendocrine tumor in small bowel...

https://connect.mayoclinic.org/comment/873174/

Discussion: Neuroendocrine tumor in small bowel with lymph nodes involved

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 5, 2023

Follow

7230

28 minutes ago

Pancreatic Cancer

Follow

2368

49 minutes ago

Visiting Mayo Clinic

Follow

4740

1 hour ago

Follow

5735

1 hour ago

Digestive Health

Follow

13194

1 hour ago