Neuroendocrine Tumors (NETs) Support Group

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Comments (881)

Hello @ds231 and @sammydj and welcome to the NETs support group on Mayo Connect. I am...

https://connect.mayoclinic.org/comment/1289819/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 25, 2025

Now I am back with some updates. Since Lutathera treatment in 2023, I had 15 fractions...

https://connect.mayoclinic.org/comment/1226272/

Discussion: 4 treatment options from my doctor, which one should I start with?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 31, 2025

I was Dx’d with DIPNECH post op after removal of right middle lobe Oct 2023. PET...

https://connect.mayoclinic.org/comment/1108711/

Discussion: DIPNECH (diffuse idiopathic pulmonary neuroendocrine cell hyperplasia)

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 20, 2024

Sorry l have been sick, Yes it was the scan we all were talking about! The...

https://connect.mayoclinic.org/comment/1033757/

Discussion: High risk surgery. Is it worth it?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 15, 2024

Thanks to everyone for responding. I am going to check with my oncologist and surgeon about...

https://connect.mayoclinic.org/comment/1107805/

Discussion: Sarcoidosis and Lung NET, upcoming surgery

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 18, 2024

Hello @megansims I can certainly understand your concern about your symptoms and also about your intermittent...

https://connect.mayoclinic.org/comment/271250/

Discussion: Possible NET with No Evidence of Tumor: Mediastinal Mass

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 5, 2019

Your words have comforted me too. Thank you for sharing your cancer journey. I too have...

https://connect.mayoclinic.org/comment/232887/

Discussion: Facing Cancer Recurrence, PTSD & Acknowledging Mental Health

Support Group: Cancer: Managing Symptoms

Posted: Mar 21, 2019

I have had nodules in has of lu mgs 6+ years, scanned for 4 years, then...

https://connect.mayoclinic.org/comment/1030562/

Discussion: High risk surgery. Is it worth it?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 9, 2024

@sophiarose I’ve been taking octreotide injections for lung NETs and DIPNECH for 3.5 years and it...

https://connect.mayoclinic.org/comment/1181820/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 29, 2024

It is my understanding that you need to understand the cellular structure of the problem and...

https://connect.mayoclinic.org/comment/772407/

Discussion: Carcinoid Tumorlets Neuroendocrine tumor/Cell Hyperplasia - DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 12, 2022

It’s really hard to advise someone as to what steps they should take, he would want...

https://connect.mayoclinic.org/comment/1377217/

Discussion: Atypical Carcinoid Tumor - lower left lobectomy. Radiation questions

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 23, 2025

I was diagnosed with stage 3 atypical carcinoid in dec of 2023. Ki-67 number was 5....

https://connect.mayoclinic.org/comment/1266745/

Discussion: Atypical Lung NET treated with radiation: What was your outcome?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 25, 2025

@spaztwobe I feel your frustration. It took 12 years to correctly diagnose my lung NETs and...

https://connect.mayoclinic.org/comment/1315349/

Discussion: Diagnosis Frustrated: How you were diagnosed with NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 28, 2025

In 2019 it was accidentally discovered that I had a lesion on the lower right lobe...

https://connect.mayoclinic.org/comment/1062064/

Discussion: Describe your recovery from lung NET surgery

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 4, 2024

I was diagnosed with DIPNECH at National Jewish Health (NJH) 3/23. I've been coughing and being...

https://connect.mayoclinic.org/comment/906680/

Discussion: New DIPNECH diagnosis, need advice on doctors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 2, 2023

Hello. I am Angela and I am from NE Iowa. When I was thinking of things...

https://connect.mayoclinic.org/comment/816813/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 24, 2023

Am such a newbie at all this I am not sure this si where my post...

https://connect.mayoclinic.org/comment/232955/

Discussion: Facing Cancer Recurrence, PTSD & Acknowledging Mental Health

Support Group: Cancer: Managing Symptoms

Posted: Jul 7, 2019

@guyjeff123 Hello Jeffrey, It sounds like you have had a lot of medical trauma lately. I...

https://connect.mayoclinic.org/comment/1469889/

Discussion: Anyone have anything to share on Neuroendoscopic SCLC? In hospice

Support Group: Lung Cancer

Posted: Dec 29, 2025

Hello @dak10 and welcome to the NETs discussion on Mayo Clinic Connect. I can see that...

https://connect.mayoclinic.org/comment/827193/

Discussion: Newly diagnosed-Primary Malignant Neuroendocrine of Lung

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 16, 2023

Many thanks to each of you for weighing in. I live on the east coast, about...

https://connect.mayoclinic.org/comment/1392953/

Discussion: Biopsy showed DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 13, 2025

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