Neuroendocrine Tumors (NETs) Support Group

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Comments (419)

Hello @jessie1990, and welcome to the NETs support group on Mayo Clinic Connect. Carcinoid tumors are...

https://connect.mayoclinic.org/comment/1426976/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 30, 2025

Hello @cgshields1129 and welcome to the NETs support group on Mayo Connect. It sounds as if...

https://connect.mayoclinic.org/comment/1227266/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 1, 2025

I’ve been taking octreotide injections for over 3 years for lung NETs. Cause fatigue especially the...

https://connect.mayoclinic.org/comment/1098642/

Discussion: Anyone have side effects after Lanreotide injection?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 3, 2024

Hello @gesmone1 and welcome to the NET support group on Mayo Connect. I'm glad that you...

https://connect.mayoclinic.org/comment/939679/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 1, 2023

@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

@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

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

@gig666, great question. @jlsgt is right that the term carcinoid is out of favor. Here's some...

https://connect.mayoclinic.org/comment/1235902/

Discussion: Carcinoid NET changed to carcinoma: What's the difference?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 13, 2025

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

Hi Mike @mikecincy Sorry to hear you've joined the NETs club. It looks like you're doing...

https://connect.mayoclinic.org/comment/885633/

Discussion: NET found by colonoscopy. What to expect and how should I approach

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 26, 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 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

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

@markmark007 I take octreotide injections for lung NETS and DIPNECH. My 50+ lung tumors are very...

https://connect.mayoclinic.org/comment/966952/

Discussion: Octreotide Injections - Skipping One or More?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 18, 2023

Your English is great and your story was easy to follow. Definitely do all the monitoring...

https://connect.mayoclinic.org/comment/1237831/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 15, 2025

Hi @nana120 I believe your hair loss will stabilize. My hair has really thinned due to...

https://connect.mayoclinic.org/comment/1008942/

Discussion: Anyone have hair loss with lanreotide?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 3, 2024

Hello @tonyhasumners and welcome to the NETs discussion group on Mayo Connect. I moved your message...

https://connect.mayoclinic.org/comment/804469/

Discussion: Typical Carcinoid Tumor in Lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 31, 2023

I also just had a copper scan August 2022 they found a hemangioma in my 5th...

https://connect.mayoclinic.org/comment/750923/

Discussion: Liver mets mistaken as hemangioma or harmatoma on MRI

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 17, 2022

@mlbschuler @grec I have both DIPNECH and lung NETs and yes, it is scary to have...

https://connect.mayoclinic.org/comment/1004928/

Discussion: Neuroendocrine cells in Breast and Lungs DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 27, 2024

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