Neuroendocrine Tumors (NETs) Support Group

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Comments (880)

@colleenyoung I had microwave ablation (heat instead of cold) on a 2.6 cm lung NET and...

https://connect.mayoclinic.org/comment/1460279/

Discussion: Cryoablation & Cementoplasty Treatment for NET Bone Metastases

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 13, 2025

General question...have NETS. I'm both lungs. The GA-68 Pet/scan. Reference my liver SUV. # was very...

https://connect.mayoclinic.org/comment/1054473/

Discussion: NET not found on PET/CT

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 20, 2024

I too had 5 treatments of sbrt for 2 lung nets. I did not have any...

https://connect.mayoclinic.org/comment/942220/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 5, 2023

this is a question that doesn't pertain to lung cancer , just in case someone has...

https://connect.mayoclinic.org/comment/233090/

Discussion: Facing Cancer Recurrence, PTSD & Acknowledging Mental Health

Support Group: Cancer: Managing Symptoms

Posted: Sep 23, 2019

Yes. Stage 3B inoperable large cell neuroendocrine lung cancer. Had concurrent radiation and chemo. Protocol dictated...

https://connect.mayoclinic.org/comment/1450492/

Discussion: Has anyone been diagnosed with neuroendocrine carcinoma?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 30, 2025

I recently had my first appointment with DR Starr It is very important that he have...

https://connect.mayoclinic.org/comment/1483504/

Discussion: Tips about preparing for my second opinion appointment at Mayo

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 16 4:29am

I have been on Everlimos for 12 weeks. A follow up CT done recently showed slight...

https://connect.mayoclinic.org/comment/1524872/

Discussion: Previous heart surgery & risks of surgery to remove lung net

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 11 7:07pm

I coughed constantly for 30 years due to lung NETs and DIPNECH but octreotide injections for...

https://connect.mayoclinic.org/comment/1067737/

Discussion: Describe your recovery from lung NET surgery

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 14, 2024

Hi @amd12 -- Are you still using this message board? Just wondering what the status of...

https://connect.mayoclinic.org/comment/867413/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 27, 2023

I had a large one in my left lower lobe. Almost 2cm and they weren't sure...

https://connect.mayoclinic.org/comment/1318419/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 2, 2025

@mcbyron How was your experience with Dr. Liu? I’m impressed by him after watching many presentations....

https://connect.mayoclinic.org/comment/1142067/

Discussion: Neuroendocrine cells in Breast and Lungs DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 15, 2024

@hopeful33250 In the Spring of 2023 I had issues with bronchitis which initially seemed to improve...

https://connect.mayoclinic.org/comment/1450946/

Discussion: Has anyone been diagnosed with neuroendocrine carcinoma?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 1, 2025

I have a Lung Net that is well defined, grade one. It is in my middle...

https://connect.mayoclinic.org/comment/941988/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 4, 2023

Hello @cercare and welcome to the NETs support group on Mayo Connect. I can certainly understand...

https://connect.mayoclinic.org/comment/1463885/

Discussion: 1 yr 9 months post upper left lobectomy, shortness of breath

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 19, 2025

A year ago I had a similar event except my 6.9cm tumor was in my left...

https://connect.mayoclinic.org/comment/1237625/

Discussion: Diagnosed with NET si-NET Stage 1 Grade 1

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 15, 2025

@tomrennie Typical and atypical grading only applies to lung NETs. I feel like GI and lung...

https://connect.mayoclinic.org/comment/1430632/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 4, 2025

Hi @gmapam My lung NETS team happens to be at UCLA. I also had my NETSPOT...

https://connect.mayoclinic.org/comment/884379/

Discussion: Recently diagnosed with a NET in my middle lobe of my right lung.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 24, 2023

@nodunk- I did not mean to sound flippant about your choice of self-medicating. I am sorry...

https://connect.mayoclinic.org/comment/742576/

Discussion: Have you ever had hiccups with or after chemotherapy?

Support Group: Cancer: Managing Symptoms

Posted: Aug 28, 2022

I’m 68 yr old woman. I had a lot of tests done before surgery and they...

https://connect.mayoclinic.org/comment/1237853/

Discussion: Diagnosed with NET si-NET Stage 1 Grade 1

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 15, 2025

My dogs are my very dearest friends and companions. Wouldn’t have made it as well as...

https://connect.mayoclinic.org/comment/233079/

Discussion: Facing Cancer Recurrence, PTSD & Acknowledging Mental Health

Support Group: Cancer: Managing Symptoms

Posted: Sep 20, 2019

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