Neuroendocrine Tumors (NETs) Support Group | Page 15

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

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

@kjstein Hello @kjstein: Thank you for sharing your experience with Lutathera and what to expect, including...

https://connect.mayoclinic.org/comment/1534540/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 24 3:57pm

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

@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

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

@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

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

@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

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

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

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

I have been just diagnosed with a bronchial carcinoid. I thought my only option was surgical...

https://connect.mayoclinic.org/comment/1056379/

Discussion: Lung nodule could be slow growing carcinoid: Watch and wait is scary

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 24, 2024

I guess this is the end of the run on PRRT. I have lung nets with...

https://connect.mayoclinic.org/comment/257060/

Discussion: Interested in hearing people's experiences with PRRT

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 14, 2021

I will say a prayer for you! I am wondering if by any chance your Dr....

https://connect.mayoclinic.org/comment/747813/

Discussion: Treatments for Carcinoids

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 10, 2022

@sakota- Absolutely Joan. It does help for sure.I have to wait until early December for my...

https://connect.mayoclinic.org/comment/233064/

Discussion: Facing Cancer Recurrence, PTSD & Acknowledging Mental Health

Support Group: Cancer: Managing Symptoms

Posted: Sep 18, 2019

Hello @rkruzeski and welcome to Mayo Clinic Connect. I am glad you found this forum and...

https://connect.mayoclinic.org/comment/1524001/

Discussion: Anyone have experience with cabozantinib (Cabometyx)?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 10 12:52pm

@tomrennie I will have surgical debulking guided by ultrasound, The problem is one of the tumors...

https://connect.mayoclinic.org/comment/1524255/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 10 8:11pm