Neuroendocrine Tumors (NETs) Support Group

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Comments (269)

Thank you for all the information. I have nonfunctioning lung to liver Net just found out...

https://connect.mayoclinic.org/comment/671705/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 17, 2022

Hi, newly diagnosed NET in left lower lung. Going to see surgeon this coming week. Anyone...

https://connect.mayoclinic.org/comment/666911/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 1, 2022

I’d had GI issues for years, never mentioned it to doctors. I was diagnosed Lactose intolerance...

https://connect.mayoclinic.org/comment/303673/

Discussion: NETs, Toilet Paper, a rant and a little humor

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 29, 2020

I joined the NET support group because my father had an intestinal carcinoid tumor; my half...

https://connect.mayoclinic.org/comment/275684/

Discussion: What topics do you want for the Neuroendocrine Support Group?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 22, 2019

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

Hello @lrittmiller and welcome to the NETs support group on Mayo Connect. We have many members...

https://connect.mayoclinic.org/comment/1107836/

Discussion: DIPNECH (diffuse idiopathic pulmonary neuroendocrine cell hyperplasia)

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 18, 2024

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 did 5 year watch on my lung nodules. then accidentally with through CAT scan two...

https://connect.mayoclinic.org/comment/1057169/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 25, 2024

Hi @dipnech67 I would be happy to speak with you. I just sent you a private...

https://connect.mayoclinic.org/comment/1055386/

Discussion: New DIPNECH diagnosis, need advice on doctors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 22, 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

@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

What is the difference with Atypical Nets. And typical? This is gig666/ have they say just...

https://connect.mayoclinic.org/comment/1029596/

Discussion: High risk surgery. Is it worth it?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 8, 2024

My chemotherapy was difficult to deal with, it wasn’t immediate but accumulative effects were challenging. Fatigue,...

https://connect.mayoclinic.org/comment/1025991/

Discussion: Atypical pulmonary carcinoid

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 2, 2024

Hello @grec and welcome to the NETs support group on Mayo Connect. It is a good...

https://connect.mayoclinic.org/comment/1004066/

Discussion: Neuroendocrine cells in Breast and Lungs DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 26, 2024

Hi @ocean3131 I also have DIPNECH and you can read my other posts for more details...

https://connect.mayoclinic.org/comment/987810/

Discussion: Carcinoid Tumorlets Neuroendocrine tumor/Cell Hyperplasia - DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 28, 2023

While my tumors have been located and biopsies and I’m on my seventh injection of Lanreotide...

https://connect.mayoclinic.org/comment/933719/

Discussion: Carcinoid syndrome; NET not found

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 21, 2023

Know that surgery is considered the “gold standard” treatment for lung NETs. You want it out...

https://connect.mayoclinic.org/comment/899337/

Discussion: Newly diagnosed High-Grade Neuroendocrine Lung Carcinoma

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 20, 2023

Hi Jane @gram26 I would agree with Theresa to check out all the DIPNECH comments on...

https://connect.mayoclinic.org/comment/882190/

Discussion: Should I see a NET specialist?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 21, 2023

Hi all, I’m new to this forum and this condition. Started with GI pain and inconsistent...

https://connect.mayoclinic.org/comment/876745/

Discussion: Diagnosed with Stage 4 pancreatic neuroendocrine metastasized to liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 11, 2023

@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

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