Neuroendocrine Tumors (NETs) Support Group

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Comments (477)

I just had my what has become a yearly as opposed to every three to six...

https://connect.mayoclinic.org/comment/854136/

Discussion: Just diagnosed: Metastatic NETs. Treatment?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 4, 2023

Hi. I also have NET starting in the lung. It has spread to liver and lymph...

https://connect.mayoclinic.org/comment/835071/

Discussion: Newly diagnosed-Primary Malignant Neuroendocrine of Lung

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 31, 2023

I was diagnosed in January 2020, grade 3 NETs with tumors in liver, lungs, pancreas, bones,...

https://connect.mayoclinic.org/comment/828078/

Discussion: High grade 2 and 3 neuroendocrine

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 18, 2023

Hello @bluedane Thank you so much for your input! They never did biopsy from her lung,...

https://connect.mayoclinic.org/comment/826555/

Discussion: NET lung with Liver Metastasis (stage 4)

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 15, 2023

I am 69 years old and am diagnosed with multiple liver metastasis from lung carcinoid tumor....

https://connect.mayoclinic.org/comment/825019/

Discussion: Newly diagnosed-Primary Malignant Neuroendocrine of Lung

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 12, 2023

My understanding is a grade 3 of the lung is considered small cell or non small...

https://connect.mayoclinic.org/comment/813610/

Discussion: Lost with no confirmation of NETs origin: Innumerable liver lesions

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 18, 2023

Hi I was diagnosed in June of2021 with lung to liver net Ki67 1-5% with two...

https://connect.mayoclinic.org/comment/813436/

Discussion: Lost with no confirmation of NETs origin: Innumerable liver lesions

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 18, 2023

Mark, I was diagnosed with NETs (grade 2/3, inoperable, incurable) in Jan 2020 at Mayo Rochester....

https://connect.mayoclinic.org/comment/807712/

Discussion: Interested in hearing people's experiences with PRRT

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 7, 2023

@skkirby Hello Sherry, Sharing your experience here on Mayo Connect is encouraging for many who are...

https://connect.mayoclinic.org/comment/806376/

Discussion: Neuroendocrine tumor: What tests are used for diagnosis?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 4, 2023

Diagnosed 1/27/23 lung NET Bronchoscope on 1/24/23 results on 1/26/23 lymph nodes chest ok but nodule...

https://connect.mayoclinic.org/comment/803360/

Discussion: Typical Carcinoid Tumor in Lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 29, 2023

Is there a NET team anyone can recommend? I had a right upper lobe lobectomy in...

https://connect.mayoclinic.org/comment/794019/

Discussion: NET (Lung + liver metastatis) Radical nephrectomy done for RCC

Support Group: Kidney Cancer

Posted: Jan 8, 2023

Ben, I read your post with interest. I was diagnosed with an inactive, "indolent" lung NET...

https://connect.mayoclinic.org/comment/782212/

Discussion: Pancreatic NF-NET stable since 2005 - surgery or not?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 7, 2022

I do. I had a lung net removed In April. Best guy at Mayo is dr...

https://connect.mayoclinic.org/comment/771380/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 9, 2022

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

yes was found in routine blood work with liver values off further testing revealed tumors in...

https://connect.mayoclinic.org/comment/671990/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 18, 2022

Hi @amd12, welcome. You've certainly come to the right place. I can imagine that you are...

https://connect.mayoclinic.org/comment/657244/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 24, 2021

He is a cancer specialist who told me he knew all about carcinoid tumors. He never...

https://connect.mayoclinic.org/comment/1430573/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 4, 2025

@jessie1990 My net tumors were never classified as typical or atypical. The growth rate of my...

https://connect.mayoclinic.org/comment/1430272/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 3, 2025

@jessie1990 That’s a good question for the NET specialist. No one has suggested to me that...

https://connect.mayoclinic.org/comment/1428039/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 1, 2025

Is there a group for nets in the lung? Surgeon stated that treatment for a 23...

https://connect.mayoclinic.org/comment/1415764/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 14, 2025

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