Neuroendocrine Tumors (NETs) Support Group

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Comments (2,337)

So it seems like you had NETS probably back in 2020 when you went to your...

https://connect.mayoclinic.org/comment/1238731/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 16, 2025

Hi Adding a five day SBRT radiation starting next week to hit one lesion in my...

https://connect.mayoclinic.org/comment/1025698/

Discussion: My husband has had his second PRRT and is doing well!

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 1, 2024

@nannybb I've had a pet/ct scan I've had 2 bronchoscopys 2 biopsys liver mri and also...

https://connect.mayoclinic.org/comment/1432326/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 6, 2025

Hello @pnelson5220 and welcome! I appreciate you sharing about your NETs journey. The discovery and treatment...

https://connect.mayoclinic.org/comment/1393556/

Discussion: Has anyone had NET show up on CT scan, I had CT scan in 23

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 15, 2025

Oops maybe I’ve got that wrong. He started chemo in 2018 then had to go to...

https://connect.mayoclinic.org/comment/981820/

Discussion: Stage four high-grade neuroendocrine carcinoma

Support Group: Lung Cancer

Posted: Dec 16, 2023

Yah, I started Somatulin Depot Feb 15, 2023. We will monitor the liver NET via MRI...

https://connect.mayoclinic.org/comment/952826/

Discussion: Liver Transplant to Treat NETs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 23, 2023

I get tested for Chromogranin every 4 weeks. My last result was around 1000. It had...

https://connect.mayoclinic.org/comment/793083/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 6, 2023

I too have small cell cancer Mets 4 .to lungs and liver. 2017 Sept. Started out...

https://connect.mayoclinic.org/comment/232890/

Discussion: Facing Cancer Recurrence, PTSD & Acknowledging Mental Health

Support Group: Cancer: Managing Symptoms

Posted: Mar 21, 2019

I was diagnosed with NET’s starting in small bowel and metastasized to liver, I’ve been on...

https://connect.mayoclinic.org/comment/1283550/

Discussion: NET in jejunum spread to liver: Treatment options?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 16, 2025

So sorry to hear about your tumors. Can they surgically take them out to buy more...

https://connect.mayoclinic.org/comment/1511570/

Discussion: How do you mentally handle reoccurrence?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 21 8:38pm

Hi, I am Maria from Argentina. My best friend was diagnosed with neuroendocrine small cell cancer,...

https://connect.mayoclinic.org/comment/765410/

Discussion: Neuroendocrine Carcinoma with Liver Metastasis

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 25, 2022

I Had my Pet Scan today and it showed I have more Cancer spots showing up...

https://connect.mayoclinic.org/comment/1375721/

Discussion: My doctors know nothing

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 21, 2025

I had haemocolectomy of the right colon 2 months ago. I was diagnosed with NET grade...

https://connect.mayoclinic.org/comment/1179228/

Discussion: Neuroendocrine Carcinoma with Liver Metastasis

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 24, 2024

Definitely discuss with your doctor's, all I can offer in my wife's case, is her weight...

https://connect.mayoclinic.org/comment/1047722/

Discussion: Spreading NET

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 9, 2024

Hello, sophiarose! I have pancreatic NET with liver metastases. My oncologist suggested Ga68 dotatate PET scan...

https://connect.mayoclinic.org/comment/1024494/

Discussion: 68Ga DOTATATE Positron Emission Tomography (PET) at Mayo Clinic

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 28, 2024

@Kathleenandbob: Thank you for giving me realistic hope. I’m only into 1yr of 28day shots, but...

https://connect.mayoclinic.org/comment/970018/

Discussion: Anyone else get bloating and abdominal pain from NETS or Lanreotide?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 24, 2023

I'm am 56yrs old with liver NETs metastatic as well. Ki-67 is 4, well differentiated as...

https://connect.mayoclinic.org/comment/1167298/

Discussion: Dotatate lights only in liver, but report says metastatic to liver?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 3, 2024

Hi, I am assuming that pNET is for Pancreatic cancer? I was told that as we...

https://connect.mayoclinic.org/comment/916665/

Discussion: Laparoscopic Possible Open Surgery Resection - Small Bowel NETS

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 21, 2023

@colleenyoung I wanted to give an update on my CT scan after 2 PRRT infusions. Three...

https://connect.mayoclinic.org/comment/819167/

Discussion: Recurrence in Liver after Whipple

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 1, 2023

Hi katballoo! I am so glad you will be going to Mayo in Rochester. You couldn’t...

https://connect.mayoclinic.org/comment/814408/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 20, 2023

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