Neuroendocrine Tumors (NETs) Support Group

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Comments (907)

Teresa, I have symptoms that come and go.sometimes I have long periods of time where I...

https://connect.mayoclinic.org/comment/283436/

Discussion: NETest from WREN Labs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 4, 2020

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

Hi mcohan, I recommend LACNETS.org for tons of info on NETS. It's a support organization, not...

https://connect.mayoclinic.org/comment/844935/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 18, 2023

@cwm1- Good morning. I hope that this finds you on a sunny beach. You are a...

https://connect.mayoclinic.org/comment/232960/

Discussion: Facing Cancer Recurrence, PTSD & Acknowledging Mental Health

Support Group: Cancer: Managing Symptoms

Posted: Jul 8, 2019

Hi thank you for your reply. I am in Australia. What are the side effects you...

https://connect.mayoclinic.org/comment/1205619/

Discussion: Typical Carcinoid Tumor in Lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 6, 2025

Hi @rogo It seems like we’ve communicated in the past. I have DIPNECH and lung NETs...

https://connect.mayoclinic.org/comment/1070950/

Discussion: Anyone living long-term with DIPNECH on lungs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 19, 2024

I had a massive head surgery in 2012 for SCC, and related lung mets in 2014...

https://connect.mayoclinic.org/comment/232771/

Discussion: Facing Cancer Recurrence, PTSD & Acknowledging Mental Health

Support Group: Cancer: Managing Symptoms

Posted: Dec 10, 2018

I just want to give an update since I had Prenuvo Scan October 14. That scan...

https://connect.mayoclinic.org/comment/978444/

Discussion: NET symptoms despite follow-up lab work ok

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 11, 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

@aliatl Yes they gived same all three medicines, 6 times x 3 days. After 2. chemotherapy...

https://connect.mayoclinic.org/comment/823442/

Discussion: NET lung with Liver Metastasis (stage 4)

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 9, 2023

Hello @kdubbs I see that @californiazebra and @jlsgt have already introduced themselves to you and shared...

https://connect.mayoclinic.org/comment/1392077/

Discussion: Biopsy showed DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 12, 2025

I’m glad your allergies have improved and general wellness. I did allergy testing about 25 years...

https://connect.mayoclinic.org/comment/1330239/

Discussion: DIPNCEH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 18, 2025

Thank you so much! This is a beautifully curated discussion group. This was discovered 5 months...

https://connect.mayoclinic.org/comment/799429/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 20, 2023

Just recently went to Mayo for continued evaluation. The Oncologist there agreed that my symptoms were...

https://connect.mayoclinic.org/comment/271254/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 27, 2019

I have Malignant Neuroendocrine Tumors of the Lung and have been in treatment with Sandostatin LAR...

https://connect.mayoclinic.org/comment/969442/

Discussion: Octreotide Injections - Skipping One or More?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 23, 2023

Hello I too have a NET tumor on my left lung that has metastasized to my...

https://connect.mayoclinic.org/comment/955119/

Discussion: Newly diagnosed-Primary Malignant Neuroendocrine of Lung

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 28, 2023

@mhcohan NETs specialists are few and far between. I'm not sure what part of the country...

https://connect.mayoclinic.org/comment/1415817/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 14, 2025

Yes, I am scheduled to fly back to Rochester for appts Sept 29 through Oct 1....

https://connect.mayoclinic.org/comment/1346484/

Discussion: Femoral catheterization before carotid tumor removed?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 12, 2025

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