Neuroendocrine Tumors (NETs) Support Group

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@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

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

@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

@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

My husband has multiple NETs in the liver and the primary site is in the small...

https://connect.mayoclinic.org/comment/1208254/

Discussion: MRI or CatScan as follow up imaging for metastatic liver tumor?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 10, 2025

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

No. No one realized what was going on until I went home 12 days post surgery....

https://connect.mayoclinic.org/comment/674116/

Discussion: Have you ever had hiccups with or after chemotherapy?

Support Group: Cancer: Managing Symptoms

Posted: Jan 23, 2022

@jameshoch My husband was diagnosed in 2023 with grade 1, stage 4 NET. The primary tumor...

https://connect.mayoclinic.org/comment/1477609/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 8 3:32pm

@patrick031621 - I have similar conditions - surgery to remove huge pancreatic NET, metastastized to liver....

https://connect.mayoclinic.org/comment/856275/

Discussion: Just diagnosed: Metastatic NETs. Treatment?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 8, 2023

I am interested in hearing from anyone who has an insulinoma neuroendocrine tumor. I have been...

https://connect.mayoclinic.org/comment/786468/

Discussion: NETs: Anyone has Liver debulking for liver metastasis?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 19, 2022

I had 4 Lutathera treatments, and if possible would have stayed on them indefinitely. No side...

https://connect.mayoclinic.org/comment/1302753/

Discussion: Update: Lutethera treatment is over

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 12, 2025

Hello @katinka58, I'm sorry to hear the recent MRI showed more problems with your husband's lung....

https://connect.mayoclinic.org/comment/1269539/

Discussion: Living with Neuroendocrine NETS, any advice?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 29, 2025

I have not heard where PRRTwas your first course of treatment, then CAP/TEM. Of course we...

https://connect.mayoclinic.org/comment/1190917/

Discussion: Living with Neuroendocrine NETS, any advice?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 15, 2024

@chaplaindan: I was dx NET, grade 1; stage4; KI67< 1%; well differentiated, non-functioning in Oct. 2022...

https://connect.mayoclinic.org/comment/1461134/

Discussion: Anyone had a significant difference between a CT and MRI reading?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 14, 2025

Hi, I have been on lanrwotidw over 4 years. I started with a banana sized net...

https://connect.mayoclinic.org/comment/1275008/

Discussion: Diet restrictions with Lanreotide?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 5, 2025

On November 25th my Pulmonologist diagnosed me with Neuro-Endoscopic Small Cell lung cancer. About a week...

https://connect.mayoclinic.org/comment/1469727/

Discussion: Anyone have anything to share on Neuroendoscopic SCLC? In hospice

Support Group: Lung Cancer

Posted: Dec 29, 2025

I was diagnosed in 2019 with NETS of the liver my tumors were extremely large and...

https://connect.mayoclinic.org/comment/1148532/

Discussion: Straight to the liver: Anyone have NETs originating in strange areas?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 28, 2024

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