Neuroendocrine Tumors (NETs): Discussions | Page 8

Hi @tatteesmom3 , I see a thoracic oncologist who is part of a NETS team at...

https://connect.mayoclinic.org/comment/854004/

Discussion: What do I need to know about NETS?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 3, 2023

Sorry to hear of all your challenges. It's difficult when they are coming from all directions....

https://connect.mayoclinic.org/comment/1228165/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 2 11:55pm

@kdubbs Welcome to the DIPNECH family as it’s rare. I have both DIPNECH and lung NETs...

https://connect.mayoclinic.org/comment/1391732/

Discussion: Biopsy showed DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: 3 days ago

Good to know. Just frustrating that no one ever suggested the SOB on exertion was related...

https://connect.mayoclinic.org/comment/1108851/

Discussion: DIPNECH (diffuse idiopathic pulmonary neuroendocrine cell hyperplasia)

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 20, 2024

I live within reach of Memorial Sloan Kettering so called just to get a 2nd opinion....

https://connect.mayoclinic.org/comment/1087269/

Discussion: On choosing a surgeon for pulmonary carcinoid resection…

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 15, 2024

Hi @josey1 Sorry about all that you are going through. I have both DIPNECH and typical...

https://connect.mayoclinic.org/comment/906758/

Discussion: New DIPNECH diagnosis, need advice on doctors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 3, 2023

Hi @triveraderubio and others with DIPNECH and Lung NETs. I hope the octreotide is working for...

https://connect.mayoclinic.org/comment/834726/

Discussion: Carcinoid Tumorlets Neuroendocrine tumor/Cell Hyperplasia - DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 30, 2023

I have Lungs NETS in both lungs. Recent growth, small amount now diagnosed with DIPNECH. I...

https://connect.mayoclinic.org/comment/1205143/

Discussion: Concerns after lobectomy for carcinoid tumor in lung

Support Group: Lung Cancer

Posted: Jan 6 9:07am

Hi @aclanton Good luck with the waiting game. I waited for 12 years hearing guesses about...

https://connect.mayoclinic.org/comment/1076443/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 28, 2024

I take octreotide injections for lung NETs and DIPNECH to control respiratory symptoms (works great) and...

https://connect.mayoclinic.org/comment/1346205/

Discussion: Any one with Neuroendocrine tumors getting the shot once a month?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 11 11:01pm

Hello Teresa, If I had a minimal uptake 2.1 SUV 1cm tumor (multiple other had no...

https://connect.mayoclinic.org/comment/1024566/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 28, 2024

@peggymariejackson @hopeful33250 @sherikayb @debbieguk @ce1b I see some of you have lung NETs, some GI NETs,...

https://connect.mayoclinic.org/comment/861008/

Discussion: Net unknown cause of breathing problems

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 17, 2023

Hi @aclanton @terradean My largest 2.6 cm tumor was destroyed with microwave ablation. Not a fun...

https://connect.mayoclinic.org/comment/1076548/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 28, 2024

@netnan I also have lung NETs (atypical carcinoids) and DIPNECH with 50+ tumors scattered across both...

https://connect.mayoclinic.org/comment/1107096/

Discussion: Sarcoidosis and Lung NET, upcoming surgery

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 17, 2024

Hi, your story sounds like mine. I had right middle lobe removed October 2023 due to...

https://connect.mayoclinic.org/comment/1329790/

Discussion: DIPNCEH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 18 10:22am

I’ve had my first significant change recently. 3 months ago it looked like I had a...

https://connect.mayoclinic.org/comment/1223495/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 28 12:43am

Hi @mimi206 I have DIPNECH and lung NETs (typical carcinoids) with 50+ nodules so we are...

https://connect.mayoclinic.org/comment/1250591/

Discussion: DIPNECH diagnosis. Has anyone had radiation?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 4 7:24pm

Hi @blm1024 Welcome! Glad you’re in the other side of surgery. I have typical lung carcinoids...

https://connect.mayoclinic.org/comment/1350349/

Discussion: Carcinoid cancer: Want to meet others

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 17 12:27pm

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

Wow hats off to you on your journey what an experience you learned from and handled...

https://connect.mayoclinic.org/comment/821372/

Discussion: NETs: Competing Pathologies--how to sort it all out?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 5, 2023

Neuroendocrine Tumors (NETs) Support Group