Neuroendocrine Tumors (NETs) Support Group

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Comments (878)

I was diagnosed with a lung disorder - DIPNECH. I’m looking to connect with others who...

https://connect.mayoclinic.org/comment/987590/

Discussion: Carcinoid Tumorlets Neuroendocrine tumor/Cell Hyperplasia - DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 28, 2023

Okay. Please update us when you know more details. In the meantime, know that lung NETs...

https://connect.mayoclinic.org/comment/1263033/

Discussion: Neuroendocrine cell tumor

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 20, 2025

Lots of variety for you. Interesting (and good) that all your nodules are in one lung....

https://connect.mayoclinic.org/comment/1229577/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 4, 2025

Hi Larenn, May I ask how large your lung tumor and subcutaneous nodule were? I have...

https://connect.mayoclinic.org/comment/825153/

Discussion: Stage 4 Carcinoid tumor: What treatments have you had?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 12, 2023

In addition to sharing more detail about your DIPNECH symptoms, in what way do you not...

https://connect.mayoclinic.org/comment/1108016/

Discussion: DIPNECH (diffuse idiopathic pulmonary neuroendocrine cell hyperplasia)

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 19, 2024

Welcome to Connect: I was diagnosed with Non Small Cell Adnocarcinoma 11 year ago with a...

https://connect.mayoclinic.org/comment/134278/

Discussion: Typical Carcinoid Tumor in Lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 18, 2018

Where did you do the trial at in Florida? Currently I am with Moffitt Cancer Center,...

https://connect.mayoclinic.org/comment/749790/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 15, 2022

Hi. In December 2019 I had a biopsy that showed I had a 2cm non-functioning malignant...

https://connect.mayoclinic.org/comment/1067425/

Discussion: Grade 1 Non-functioning (NF) NET

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 13, 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

For anyone in the S. CA area, I had my DOTATATE PET Scan at UCLA in...

https://connect.mayoclinic.org/comment/835350/

Discussion: Octreoscan/Ga-68 DOTATATE PET/CT -- Where to go?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 31, 2023

I am new to this forum. Have 2 carcinoid tumors in left lung that are inoperable....

https://connect.mayoclinic.org/comment/831583/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 25, 2023

@tomrennie lung nurse told me I don't need to worry about the half they removed in...

https://connect.mayoclinic.org/comment/1454821/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 6, 2025

Hello @cgshields1129 and welcome to the NETs support group on Mayo Connect. It sounds as if...

https://connect.mayoclinic.org/comment/1227266/

Discussion: 4 treatment options from my doctor, which one should I start with?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 1, 2025

@rachismarie Sorry to hear about all you’re going thru. I understand how scary it can all...

https://connect.mayoclinic.org/comment/1181823/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 29, 2024

I had left lower lobe removed had bad coughing to point of fracturing a lung cough...

https://connect.mayoclinic.org/comment/1066999/

Discussion: Describe your recovery from lung NET surgery

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 13, 2024

Neutoendocrine dyptic tumor on the outside of your lung? I have not heard.of that type. My...

https://connect.mayoclinic.org/comment/1065154/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 10, 2024

@tomrennie my Oncologist went over my most recent PET scan with me. The nodes are still...

https://connect.mayoclinic.org/comment/1491384/

Discussion: Anyone having severe dizziness or lightheadedness with NETS

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 26 6:31pm

@jessie1990 I love your fur babies! So cute!!! As for pain, if it’s anything new I...

https://connect.mayoclinic.org/comment/1435491/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 10, 2025

Yes. I was diagnosed with tumours on my lung 7 years ago. They were watching them...

https://connect.mayoclinic.org/comment/899066/

Discussion: Newly diagnosed High-Grade Neuroendocrine Lung Carcinoma

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 20, 2023

I am still relatively new to this whole journey. I am curious what “type” of cancer...

https://connect.mayoclinic.org/comment/816816/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 24, 2023

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