Neuroendocrine Tumors (NETs) Support Group

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Comments (653)

HI, I'm new to this site. In 2016 I had a bowell blockage that turned out...

https://connect.mayoclinic.org/comment/748393/

Discussion: Treatments for Carcinoids

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 11, 2022

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

In partial response to one of your latter questions. I am on Octreotide or Sandostatin as...

https://connect.mayoclinic.org/comment/896094/

Discussion: NET - Insulinoma

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 15, 2023

I have not had chemo - PRRT (Peptide Receptor Radionuclide Therapy) is NOT chemo. It is...

https://connect.mayoclinic.org/comment/799329/

Discussion: Neuroendocrine tumor: What tests are used for diagnosis?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 20, 2023

Thanks Vinnie and Tom/Rennie! I wish you both the best! Its so good to hear that...

https://connect.mayoclinic.org/comment/1476547/

Discussion: What does the future look like for a stage 4 NET patient?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 7 10:18am

Hi Teresa. Just found this site and saw your post. I had the Ga68 scan at...

https://connect.mayoclinic.org/comment/107243/

Discussion: Ga-68 for detecting NETs

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 1, 2017

That’s exactly what happened to me in 2022; had every imaginable test possible & last test...

https://connect.mayoclinic.org/comment/1348205/

Discussion: What's next after SiNETS?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 14, 2025

Might I suggest you get a 2nd opinion? It's just a thought. Also, possibly speak with...

https://connect.mayoclinic.org/comment/1072193/

Discussion: Spreading NET

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 21, 2024

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 I am so sorry to hear of your situation I had primary NET liver cancer...

https://connect.mayoclinic.org/comment/776351/

Discussion: Does sandostatin work?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 22, 2022

Was it a PET Dotatate scan he had? That's the one my Doc uses to find...

https://connect.mayoclinic.org/comment/1248357/

Discussion: New Diagnosis: husband's labs are all indicating NET

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 1, 2025

Good morning, My NET is Pancreas to Liver also to numerous to operate, some were over...

https://connect.mayoclinic.org/comment/913398/

Discussion: Anyone with an insulinoma have only therapies instead of surgery?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 15, 2023

It great your doctor reviewed the options you have, but the doctor wants you to choose?...

https://connect.mayoclinic.org/comment/899570/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 21, 2023

My husband was diagnosed with GITract small bowel Neuroendocrine tumor Stage 4 Grade 2 well-differentiated KY...

https://connect.mayoclinic.org/comment/1120029/

Discussion: Everolimus for multiple Neuroendocrine tumors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 8, 2024

Hello, My name is Ristene and I was diagnosed with a glomus jugular paraganglioma on 1/10/19....

https://connect.mayoclinic.org/comment/244178/

Discussion: Paraganglioma / Carotid Body Tumor Question

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 2, 2019

Teresa, Thanks! He ordered a couple of repeat CT scans, had many of my previous images...

https://connect.mayoclinic.org/comment/271263/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 30, 2019

Hi, Hopeful--yes, you have that right, my tumors were never caught by colonoscopy, upper endoscopy, CT...

https://connect.mayoclinic.org/comment/127208/

Discussion: Treatments for Carcinoids

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 9, 2016

Thank you so much!! It has been such a horrible last few years. When I started...

https://connect.mayoclinic.org/comment/134550/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 24, 2019

Hi Chaplain Dan, Your wife’s initial case is similar in many ways to mine… 12 years...

https://connect.mayoclinic.org/comment/1250290/

Discussion: New and concerned about my wife.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 4, 2025

Hi @aclanton @terradean My largest 2.6 cm tumor was destroyed with microwave ablation. Not a fun...

https://connect.mayoclinic.org/comment/1076548/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 28, 2024

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