Neuroendocrine Tumors (NETs) Support Group

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Comments (260)

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

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

@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 sister is still in hospital being treated for inflammation of pericardium, complication after right lung...

https://connect.mayoclinic.org/comment/1024416/

Discussion: Atypical pulmonary carcinoid

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 28, 2024

My sister returned to hospital on Tuesday with severe chest pain . They were afraid of...

https://connect.mayoclinic.org/comment/1021153/

Discussion: Atypical pulmonary carcinoid

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 23, 2024

@ekri, good to hear that the surgery was able to have clear margins. You're asking good...

https://connect.mayoclinic.org/comment/1013386/

Discussion: Atypical pulmonary carcinoid

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 10, 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

Hello, I have a stage 3 lung NET. I found a lot of good information on...

https://connect.mayoclinic.org/comment/998253/

Discussion: Statistics on progression free survival while on SSA / Lanreotide

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 16, 2024

Hi @jhhaas, I'm tagging fellow members like @mcohan @magnum2 @meryls12 @californiazebra who have experience with DIPNECH...

https://connect.mayoclinic.org/comment/976431/

Discussion: Anyone had surgery to remove typical carcinoids of the lung?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 7, 2023

Hi Emily, My strength after the lobectomy was slow at the beginning. My surgery was September...

https://connect.mayoclinic.org/comment/975317/

Discussion: Anyone with carcinoid tumors in lung and stomach?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 5, 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

Yes I have had one discovered about two years ago with a heart MRI. It was...

https://connect.mayoclinic.org/comment/907604/

Discussion: Has anyone had NETs metastasized to heart?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 4, 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

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

I became aware of the nodule in February 2023 after CT scan due to COVID .I...

https://connect.mayoclinic.org/comment/831626/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 25, 2023

Hello @sun56 and welcome to the NETs discussion on Mayo Clinic Connect. I can understand what...

https://connect.mayoclinic.org/comment/831612/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 25, 2023

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