Neuroendocrine Tumors (NETs) Support Group

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Hello I have a couple of NETs tumors. One in the lung one in the mediastinum....

https://connect.mayoclinic.org/comment/1198328/

Discussion: Any advice for someone recently diagnosed with NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 27, 2024

Comment

No wheezing or shortness of breath, however I had coughed up blood maybe 4 times in...

https://connect.mayoclinic.org/comment/1198235/

Discussion: Any advice for someone recently diagnosed with NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 27, 2024

Comment

Hi @donnapeck51 I’m sorry to hear about your Merkel cell carcinoma. I’m not a doctor but...

https://connect.mayoclinic.org/comment/1172492/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 12, 2024

Comment

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

Comment

Good to know. Just frustrating that no one ever suggested the SOB on exertion was related...

https://connect.mayoclinic.org/comment/1108851/

Discussion: DIPNECH (diffuse idiopathic pulmonary neuroendocrine cell hyperplasia)

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 20, 2024

Comment

Just recently went to Mayo for continued evaluation. The Oncologist there agreed that my symptoms were...

https://connect.mayoclinic.org/comment/271254/

Discussion: Possible NET with No Evidence of Tumor: Mediastinal Mass

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 27, 2019

Comment

@spaztwobe I feel your frustration. It took 12 years to correctly diagnose my lung NETs and...

https://connect.mayoclinic.org/comment/1315349/

Discussion: Diagnosis Frustrated: How you were diagnosed with NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 28, 2025

Comment

Yes, please get a second opinion from a NETs multidisciplinary team familiar with DIPNECH before your...

https://connect.mayoclinic.org/comment/1208016/

Discussion: Diagnosed with DIPNECH yesterday!

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 10, 2025

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