Neuroendocrine Tumors (NETs) Support Group

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Comments (652)

Here’s a brief summary prior to starting treatment with Dr Wolin. 59 year old male presents...

https://connect.mayoclinic.org/comment/1238487/

Discussion: Diagnosed with NET si-NET Stage 1 Grade 1

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 16, 2025

Shari, that's so great to hear that you are doing so well!!! Did you have genetic...

https://connect.mayoclinic.org/comment/244183/

Discussion: Paraganglioma / Carotid Body Tumor Question

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 2, 2019

Thanks for your update. It made me realize I haven't even looked at this thread since...

https://connect.mayoclinic.org/comment/1272515/

Discussion: NETs: Scheduled for small intestine resection: What to expect?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 2, 2025

Hi tatteesmom3, are you seeing a NETS (neuroendocrine tumor) multidisiciplinary team or just a local oncologist...

https://connect.mayoclinic.org/comment/844936/

Discussion: What do I need to know about NETS?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 18, 2023

I, too, have high grade (2/3) metastatic NETs—liver, pancreas, lungs, bone, adrenal gland, parotid gland. I...

https://connect.mayoclinic.org/comment/811356/

Discussion: Lost with no confirmation of NETs origin: Innumerable liver lesions

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 14, 2023

@gprior Thank you for the response. You’ve been through a lot. I’m sorry to hear of...

https://connect.mayoclinic.org/comment/1224889/

Discussion: Already on oxygen - diagnosed with DIPNECH: What happens next?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 29, 2025

@sop, I’m sorry to hear that your husband has been diagnosed with these rare tumors, but...

https://connect.mayoclinic.org/comment/943323/

Discussion: Interested in hearing people's experiences with PRRT

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 6, 2023

Talkativeinfl, first of all, I’m so very sorry to hear about your husband’s situation and your...

https://connect.mayoclinic.org/comment/873777/

Discussion: Diagnosed with Stage 4 pNET: What should I know?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 6, 2023

He was diagnosed in December 2019, had surgery in March 2020, I think the first six...

https://connect.mayoclinic.org/comment/899229/

Discussion: First Lanreotide Injection: Any tips about diet and side effects?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 20, 2023

Yes, please get a second opinion from a NETs multidisciplinary team familiar with DIPNECH before your...

https://connect.mayoclinic.org/comment/1208016/

Discussion: Diagnosed with DIPNECH yesterday!

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 10, 2025

Hi @splendrous 2008-2010: they didn't know what the 50+ nodules were, benign or cancer, so many...

https://connect.mayoclinic.org/comment/1179339/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 24, 2024

@nannybb I’ve read all of your responses, but I did not see a previous one regarding...

https://connect.mayoclinic.org/comment/1431871/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 5, 2025

@mgb20, I totally agree with @phyllisden ! It was probably 15 years before I was finally...

https://connect.mayoclinic.org/comment/831438/

Discussion: NETs: Scheduled for small intestine resection: What to expect?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 24, 2023

Hi Teresa: I would be glad to share my journey with you and your followers. In...

https://connect.mayoclinic.org/comment/107245/

Discussion: Ga-68 for detecting NETs

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 2, 2017

Thank you and congratulations on living with this monster. I am USUALLY an upbeat optimistic person...

https://connect.mayoclinic.org/comment/881074/

Discussion: Diagnosed with Stage 4 pNET: What should I know?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 19, 2023

My husband’s journey started In 2015 with stomach pains nothing diagnosed. Then in 2019 he was...

https://connect.mayoclinic.org/comment/1121892/

Discussion: Pancreastatin level at 1500

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 11, 2024

@mcohan Most doctors, even radiologists, pulmonologists and oncologists haven't even heard of DIPNECH. I recently went...

https://connect.mayoclinic.org/comment/965599/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 16, 2023

Here is my diet which covers almost every day of the year. Breakfast---a cup of coffee...

https://connect.mayoclinic.org/comment/856388/

Discussion: Just diagnosed: Metastatic NETs. Treatment?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 8, 2023

You just explained my entire situation, which started years ago and no primary tumor. I have...

https://connect.mayoclinic.org/comment/1542698/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 4 12:28pm

I was diagnosed with NET's in my Liver back in December 2022, started Lanreodide for a...

https://connect.mayoclinic.org/comment/1539459/

Discussion: Does anyone have neuroendocrine small cell carcinoma of the liver?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 31 9:33am

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