Neuroendocrine Tumors (NETs) Support Group

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Comments (461)

Oh, I also suggest you hook up with a NETs specialty team (likely at a university...

https://connect.mayoclinic.org/comment/1391742/

Discussion: Biopsy showed DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 11, 2025

@melmangen, might Mayo Clinic in Jacksonville, Florida be an option for you? Mayo Clinic, Florida has...

https://connect.mayoclinic.org/comment/753620/

Discussion: Anyone gone to Mayo Clinic in Rochester Minnesota for carcinoid tumors?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 25, 2022

@pantfan I don't have a lung neuroendocrine tumor. I have a pancreatic NET that has spread...

https://connect.mayoclinic.org/comment/1589884/

Discussion: Anyone with lung neuroendocrine tumor experienced significant weight?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 3 1:02pm

@ant12 One more thing, lanreotide/octreotide injections can really help with carcinoid syndrome -- the flushing, diarrhea,...

https://connect.mayoclinic.org/comment/1033639/

Discussion: High risk surgery. Is it worth it?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 14, 2024

@annie12345 Typical carcinoids are not from smoking (smokers get atypical carcinoids). Nothing you did. My brother...

https://connect.mayoclinic.org/comment/1330066/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 18, 2025

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

Hello @cmc188 and welcome to Connect. I would like to introduce you to @californiazebra and @triveraderubio,...

https://connect.mayoclinic.org/comment/1199781/

Discussion: Typical Carcinoid Tumor in Lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 29, 2024

@dipnech67 Robert Ramirez MD at Vanderbilt in Nashville is a NETS specialist who talks about DIPNECH...

https://connect.mayoclinic.org/comment/1054381/

Discussion: New DIPNECH diagnosis, need advice on doctors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 20, 2024

@kdubbs Also, you do have Emory University and Winship Cancer Institute there. Because DIPNECH is rare...

https://connect.mayoclinic.org/comment/1532932/

Discussion: DIPNECH dr in GA- Atlanta

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 22 1:52pm

Welcome @surbhi1. I added your message to the NETs Support Group as well as the cancer...

https://connect.mayoclinic.org/comment/793761/

Discussion: NET (Lung + liver metastatis) Radical nephrectomy done for RCC

Support Group: Kidney Cancer

Posted: Jan 7, 2023

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, 2025

@gig666 How did your PET scan turn out? Was it a DOTATATE scan specifically for NETs?...

https://connect.mayoclinic.org/comment/1033637/

Discussion: High risk surgery. Is it worth it?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 14, 2024

Thank you yes I don't drink much at all just if I go out for a...

https://connect.mayoclinic.org/comment/1330028/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 18, 2025

@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 @bcraft. I'm new to this site too and what brought me here was a search...

https://connect.mayoclinic.org/comment/838450/

Discussion: New DIPNECH diagnosis, need advice on doctors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 5, 2023

@pammy229 Hello Pamela and welcome to the NETs support group on Mayo Connect. This is a...

https://connect.mayoclinic.org/comment/1198172/

Discussion: Any advice for someone recently diagnosed with NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 27, 2024

Hi @breck Thank you for your response. Sorry this is so scary and you have breathing...

https://connect.mayoclinic.org/comment/1170238/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 8, 2024

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

@mhcohan Yes, I had a 26 mm lung NET destroyed with microwave ablation 4 years ago....

https://connect.mayoclinic.org/comment/1415806/

Discussion: I have a neuroendocrine tumour in the small bowel and liver lesions

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 14, 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

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