Neuroendocrine Tumors (NETs) Support Group

Public Support Group

Follow for updates

Search discussions

Start a new discussion

988 total results

Comments (907)

It seems my first lobectomy 6 years ago was dipnech related nets, my second lobectomy in...

https://connect.mayoclinic.org/comment/1229468/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 4, 2025

I too have a Lung NETs that has metastasized to my lymph nodes. My understanding is...

https://connect.mayoclinic.org/comment/939932/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 1, 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

I am recovering from surgery for lung carcinoid tumor. I still have 3 other tumors they...

https://connect.mayoclinic.org/comment/1417643/

Discussion: Carcinoid Crisis Questions

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 17, 2025

Hello @ghassan It has been awhile since you last posted and I was wondering how you...

https://connect.mayoclinic.org/comment/134279/

Discussion: Typical Carcinoid Tumor in Lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 18, 2018

I am currently having SBRT to radiate 2 carcinoid lung tumors that are 1.5 cm. They...

https://connect.mayoclinic.org/comment/838553/

Discussion: New DIPNECH diagnosis, need advice on doctors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 6, 2023

@musicflowers4u- Good morning. Thank you for being with us. as you know survivors represent hope to...

https://connect.mayoclinic.org/comment/232886/

Discussion: Facing Cancer Recurrence, PTSD & Acknowledging Mental Health

Support Group: Cancer: Managing Symptoms

Posted: Mar 21, 2019

Greetings. I am a newbee and just joined. I have a lung carcinoid. Actually there are...

https://connect.mayoclinic.org/comment/134267/

Discussion: Typical Carcinoid Tumor in Lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 10, 2018

Welcome, @lchaney1951. I moved your question to the Neuroendocrine Tumors (NETs) support group here: https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/ where...

https://connect.mayoclinic.org/comment/1022343/

Discussion: Carcinoid tumor right middle lobe.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 25, 2024

Hello @amd12, I'd like to join Colleen, @colleenyoung, in welcoming you to the NETs group at...

https://connect.mayoclinic.org/comment/657390/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 25, 2021

Hi, I have had 2 of these scans, one in 3/23 and my second on 2/20/24,...

https://connect.mayoclinic.org/comment/1024460/

Discussion: 68Ga DOTATATE Positron Emission Tomography (PET) at Mayo Clinic

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 28, 2024

My Chromogranin A was 1507 last year and the PET was negative. In February I was...

https://connect.mayoclinic.org/comment/880883/

Discussion: High or Fluctuating Chromogranin A Level: What does it mean?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 18, 2023

@jessie1990 That’s unfortunate that tiny tumor is impacting two lobes. I’ve read about partial lobe removal...

https://connect.mayoclinic.org/comment/1428036/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 1, 2025

@winniew 10 cm lung NET, wow. Glad that’s out of there. Sorry about your IPMN. As...

https://connect.mayoclinic.org/comment/1393078/

Discussion: Anyone have a small pancreatic IPMN cyst that turned out to be cancer?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 13, 2025

DIPNECH and lung NETs typically do have somatostatin receptors which is why I had the DOTATATE...

https://connect.mayoclinic.org/comment/1361481/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 1, 2025

Hello, @aliciabusiness5, and welcome to Mayo Connect. I you are dealing with lung NETs as well...

https://connect.mayoclinic.org/comment/1266869/

Discussion: Liver function (birirubin, globulin, glucose, iron) and Octreotide

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 25, 2025

All was going well post surgery on my lung until this past December when they found...

https://connect.mayoclinic.org/comment/757946/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 6, 2022

@nannybb I agree with you that medical stuff is interesting. I wanted to be a veterinarian...

https://connect.mayoclinic.org/comment/1431902/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 6, 2025

I have lung nets that were dx several years ago and biopsied at that time. I...

https://connect.mayoclinic.org/comment/1325579/

Discussion: Anyone have lung NETs lining your pleura?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 12, 2025

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

Follow

8199

16 minutes ago

Pancreatic Cancer

Follow

3571

2 hours ago

Cancer: Managing Symptoms

Follow

5678

2 hours ago

Melanoma & Skin Cancer

Follow

1073

7 hours ago

Follow

10072

8 hours ago