Neuroendocrine Tumors (NETs) Support Group

Public Support Group

Follow for updates

Search discussions

Start a new discussion

961 total results

Comments (881)

Hopefully there is someone out there still monitoring this. I have chronic NET that started in...

https://connect.mayoclinic.org/comment/1171106/

Discussion: Neuroendocrine Carcinoma with Liver Metastasis

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 10, 2024

I think you hit the nail on the head with the workaround. That being said, I...

https://connect.mayoclinic.org/comment/1126890/

Discussion: Lanreotide eventually becomes less effective, why?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 19, 2024

Thank you, and yes, I will try to update. I am not near Mayo, but I...

https://connect.mayoclinic.org/comment/1108927/

Discussion: DIPNECH (diffuse idiopathic pulmonary neuroendocrine cell hyperplasia)

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 20, 2024

Sakota- Multifocal is a category of lung cancer that since 1960 was a redefined bronchioloalveolar carcinoma...

https://connect.mayoclinic.org/comment/232727/

Discussion: Facing Cancer Recurrence, PTSD & Acknowledging Mental Health

Support Group: Cancer: Managing Symptoms

Posted: Dec 8, 2018

Hi @cmc188 I have 50+ lung NETs tumors across both lungs. I also have DIPNECH (really...

https://connect.mayoclinic.org/comment/1199984/

Discussion: Typical Carcinoid Tumor in Lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 29, 2024

@tomrennie Just returned from my checkup at Mayo Rochester. Pretty good news. They could find no...

https://connect.mayoclinic.org/comment/1411202/

Discussion: NET's Metastasis to Brain

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 8, 2025

If you’re able, always get a 2nd opinion before surgery. My lung tumor was found incidentally...

https://connect.mayoclinic.org/comment/1209090/

Discussion: Diagnosed with DIPNECH yesterday!

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 11, 2025

Thanks! @hopeful33250 those articles are helpful! I’m a caregiver. My mom was diagnosed with NETs (Primary...

https://connect.mayoclinic.org/comment/311779/

Discussion: Afinitor - Anyone have pneumonitis as a side effect?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 22, 2020

@cmc188 I don't blame you for not wanting side effects without any benefit. I have had...

https://connect.mayoclinic.org/comment/1206123/

Discussion: Typical Carcinoid Tumor in Lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 7, 2025

@lcbrazen100 I just stopped my AI this last July after 5 years...doctor wanted me to go...

https://connect.mayoclinic.org/comment/984628/

Discussion: Anyone have neuroendocrine tumor (NETs) of the breast?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 21, 2023

Hi @jogessert I met a lady through LACNETS.org that had a single 9 cm lung carcinoid...

https://connect.mayoclinic.org/comment/899451/

Discussion: Newly diagnosed High-Grade Neuroendocrine Lung Carcinoma

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 21, 2023

Thank you for sharing your difficult journey. You seem to be in the stage of diagnosis...

https://connect.mayoclinic.org/comment/756676/

Discussion: Need help with diet after a hemicolectomy....

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 3, 2022

I have GERD too. Before my DIPNECH and lung NETs was diagnosed even though we knew...

https://connect.mayoclinic.org/comment/1329913/

Discussion: DIPNCEH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 18, 2025

Is there a pet scan That cat scan the body to see if there are any...

https://connect.mayoclinic.org/comment/1022418/

Discussion: Anyone else get bloating and abdominal pain from NETS or Lanreotide?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 25, 2024

NuB The VA sent me to a cancer clinic close to my home. I did not...

https://connect.mayoclinic.org/comment/764213/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 22, 2022

I had an ademocarinoma tumor removed from my top right lobe and at the same time...

https://connect.mayoclinic.org/comment/1427225/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 30, 2025

Typical carcinoids and DIPNECH are not associated with smoking. The majority of cases are non-smokers and...

https://connect.mayoclinic.org/comment/1288434/

Discussion: I am 75 and have carcinoid tumors NET in lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 23, 2025

In my experience every time I read the latest scans summary, it's a day of new...

https://connect.mayoclinic.org/comment/1219632/

Discussion: Liver masses found on CT Scan

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 23, 2025

This is my 6 years trying to get information for having Neuroendocrine Cancer, lung Nets! I...

https://connect.mayoclinic.org/comment/1203278/

Discussion: What does my dentist need to know about my NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 3, 2025

Hello Group...Just remembered I was a member here. And yes still chugging along with 2 whoppers....

https://connect.mayoclinic.org/comment/134280/

Discussion: Typical Carcinoid Tumor in Lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 10, 2019

Follow

898

26 minutes ago

Follow

8092

2 hours ago

Pancreatic Cancer

Follow

3517

2 hours ago

Cancer: Managing Symptoms

Follow

5571

5 hours ago

Digestive Health

Follow

18135

6 hours ago