Neuroendocrine Tumors (NETs) Support Group

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Comments (2,370)

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

Yes i had small bowel surgery 10 days back.. currently m recovering for chemo..i lost 12...

https://connect.mayoclinic.org/comment/786385/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 18, 2022

@firepowr, sorry to hear that the CT scan revealing more growth in the liver. Glad that...

https://connect.mayoclinic.org/comment/775388/

Discussion: Anyone gone to Mayo Clinic in Rochester Minnesota for carcinoid tumors?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 20, 2022

@tomrennie The PRRT was not bad at all. My skin is sensitive and I have to...

https://connect.mayoclinic.org/comment/1508798/

Discussion: Neuroendocrine Pancreatic Tumors with KIT Missense Variant Exon 10 GOF

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 18 10:53am

I was diagnosed with stage 4 pancreatic NETs to liver in 8/22. I will start my...

https://connect.mayoclinic.org/comment/903632/

Discussion: Should I want more treatment after pancreatic nets with lymph nodes?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 28, 2023

I met with my oncologist. The big tumors on my pancreas are about half the size...

https://connect.mayoclinic.org/comment/834133/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 29, 2023

This is all very new to me. I was just diagnosed in December 2022. I have...

https://connect.mayoclinic.org/comment/804031/

Discussion: Neck and face red flushing

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 30, 2023

@djchambers Good luck with the insurance. I know that can be frustrating. I am familiar with...

https://connect.mayoclinic.org/comment/1433281/

Discussion: New NET in liver and small intestine

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 7, 2025

ki67 20% is borderline grade 3 (like my condition) so that will make it more aggressive...

https://connect.mayoclinic.org/comment/1394494/

Discussion: Stage 4 grade2 Pancreatic Neuroendocrine ki67 20% Lanreotide

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 16, 2025

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