Neuroendocrine Tumors (NETs) Support Group

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Comments (261)

@mhcohan NETs specialists are few and far between. I'm not sure what part of the country...

https://connect.mayoclinic.org/comment/1415817/

Discussion: I have a neuroendocrine tumour in the small bowel and liver lesions

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 14, 2025

I was diagnosed with stage 3 atypical carcinoid in dec of 2023. Ki-67 number was 5....

https://connect.mayoclinic.org/comment/1266745/

Discussion: Atypical Lung NET treated with radiation: What was your outcome?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 25, 2025

@gprior Thank you for the response. You’ve been through a lot. I’m sorry to hear of...

https://connect.mayoclinic.org/comment/1224889/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 29, 2025

Hi @jan355 I'm so sorry to hear about your oxygen issues and for so many years....

https://connect.mayoclinic.org/comment/1220927/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 24, 2025

Yes, the tumor I had ablated was malignant (typical carcinoid). It was biopsied first. The microwave...

https://connect.mayoclinic.org/comment/1208685/

Discussion: Diagnosed with DIPNECH yesterday!

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 10, 2025

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

Thank you and we feel the same way. Why not monitor at this point. She feels...

https://connect.mayoclinic.org/comment/1111437/

Discussion: NET on liver: Question about treatments when no symptoms

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 25, 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

Hello @netnan, had left lung NET atypical carcinoid tumor. It was a little bigger - between...

https://connect.mayoclinic.org/comment/1106611/

Discussion: Sarcoidosis and Lung NET, upcoming surgery

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 16, 2024

The biopsy on it was completed 2 years ago before my hysterectomy, the Dr. who did...

https://connect.mayoclinic.org/comment/1078008/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 30, 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

@rogo, I believe you are referring to lung carcinoid tumors with Diffuse Idiopathic Pulmonary NeuroEndocrine Cell...

https://connect.mayoclinic.org/comment/1070380/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 18, 2024

A small nodule was discovered incidentally in an x-ray 10 years ago in my left lower...

https://connect.mayoclinic.org/comment/1056356/

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

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

I did 5 rounds of sbrt for a lung carcinoid. It went very well and destroyed...

https://connect.mayoclinic.org/comment/1025801/

Discussion: My husband has had his second PRRT and is doing well!

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 2, 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

Remember to read the posts from the discussion group in my previous post, @gig666. You will...

https://connect.mayoclinic.org/comment/1022138/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 25, 2024

I also had sbrt radiation for lung carcinoids a year ago and have been on monthly...

https://connect.mayoclinic.org/comment/1003928/

Discussion: Atypical Lung NET treated with radiation: What was your outcome?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 26, 2024

I had been diagnosed with 2 carcinoid tumors ...one in the lower lobe and one in...

https://connect.mayoclinic.org/comment/974703/

Discussion: Anyone with carcinoid tumors in lung and stomach?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 4, 2023

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