Neuroendocrine Tumors (NETs) Support Group

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Comment

No - I went to MSK and they said it was not needed at this point....

https://connect.mayoclinic.org/comment/1108856/

Discussion: DIPNECH (diffuse idiopathic pulmonary neuroendocrine cell hyperplasia)

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 20, 2024

Comment

It can sure be a frustrating journey to diagnosis, can’t it? Glad they figured yours out...

https://connect.mayoclinic.org/comment/1171342/

Discussion: How many doctors did you see to get to your NETS diagnosis?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 10, 2024

Comment

So sorry to hear about all your issues. I have DIPNECH also, dx’d after my RML...

https://connect.mayoclinic.org/comment/1222859/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 27 8:50am

Comment

Hi Jane @gram26 I would agree with Theresa to check out all the DIPNECH comments on...

https://connect.mayoclinic.org/comment/882190/

Discussion: Should I see a NET specialist?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 21, 2023

Comment

I was told when we destroyed my largest carcinoid tumor 2.6 cm with microwave ablation that...

https://connect.mayoclinic.org/comment/1108812/

Discussion: DIPNECH (diffuse idiopathic pulmonary neuroendocrine cell hyperplasia)

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 20, 2024

Comment

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

Comment

@annie12345 Typical carcinoids are not from smoking (smokers get atypical carcinoids). Nothing you did. My brother...

https://connect.mayoclinic.org/comment/1330066/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 18 4:10pm

Comment

Hi rogo yes I live with diagnosis of DIPNECH & lung neuroendocrine cancer (Typical tumor)confirmed by...

https://connect.mayoclinic.org/comment/1288532/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 23 10:55pm

Comment

Hi @tammyv615 Finally someone else who had a lung tumor ablated! I can’t say the procedure...

https://connect.mayoclinic.org/comment/1071170/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 19, 2024

Comment

Hello @oilyproudnana and welcome. It looks like your biopsy confirmed lung NETs. Is that correct? I...

https://connect.mayoclinic.org/comment/1392531/

Discussion: Has anyone had NET show up on CT scan, I had CT scan in 23

Support Group: Neuroendocrine Tumors (NETs)

Posted: 2 days ago

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