Neuroendocrine Tumors (NETs) Support Group

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Hi Margaret, every year my husband has a Dototate (sp?) PET scan. It is a more...

https://connect.mayoclinic.org/comment/764697/

Discussion: Prognosis for Metastasized NET

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 23, 2022

Hi @harley4650 Deciding on PRRT, or any type of chemotherapy, is a big decision. Getting more...

https://connect.mayoclinic.org/comment/753432/

Discussion: Newly diagnosed with NET in liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 24, 2022

In my case: I was told that the NET in small bowel (near duodenum) metastasized to...

https://connect.mayoclinic.org/comment/1241121/

Discussion: I recently had surgery to remove NET in small intestine

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 20, 2025

I have a NET but what’s a pNET? I have liver metastasis too. Could you tell...

https://connect.mayoclinic.org/comment/1071566/

Discussion: pNET with liver metastases: What is necrosis?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 20, 2024

Hello @avawein I know you were scheduled for liver surgery on 10/21. I hope that all...

https://connect.mayoclinic.org/comment/647730/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 23, 2021

My husband had y90 for a 50% liver tumor burden 15 years ago. It was wildly...

https://connect.mayoclinic.org/comment/1335437/

Discussion: Y90 AND Captem Combo

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 26, 2025

I had chemo I am grade 2 ki-67 7% stage 4 to liver as far as...

https://connect.mayoclinic.org/comment/1290666/

Discussion: I recently had surgery to remove NET in small intestine

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 26, 2025

I have pNET grade stage4 with liver metastases. I have not noticed any swelling. I am...

https://connect.mayoclinic.org/comment/883583/

Discussion: Anyone have swelling with liver metastases?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 23, 2023

@pipo It's a long list. Distal Pancreatectomy Y90 to both lobes of liver Octreotide/Lanreotide Cyberknife to...

https://connect.mayoclinic.org/comment/1407713/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 3, 2025

iam doing ok. but i have lots of diarrhea. liver is swollen, very fatigue. The oncologist...

https://connect.mayoclinic.org/comment/1038396/

Discussion: Treatment for GI NET with liver mets not working: Options?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 22, 2024

I’m being treated at Mayo Jax. Was diagnosed with NETs (Carcinoid Syndrome)December 2022, started in the...

https://connect.mayoclinic.org/comment/831689/

Discussion: Anyone treated for NETs at Mayo Clinic in Jacksonville, FL

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 25, 2023

Hello @sophiarose, I certainly look forward to hearing from you again. Has your MRI of the...

https://connect.mayoclinic.org/comment/829494/

Discussion: Bland embolization or transarterial chemoembolization (TACE)

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 21, 2023

One more thing I just want to note, I had NO symptoms. I had a hernia...

https://connect.mayoclinic.org/comment/805957/

Discussion: What's the best way to detect liver metastases?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 3, 2023

So your NET started in your liver too? That is rare. Was it therefore stage 4...

https://connect.mayoclinic.org/comment/1148306/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 27, 2024

A few months ago, they detected 2 NETs in my liver. One golf ball size. The...

https://connect.mayoclinic.org/comment/809673/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 11, 2023

They did a pet scan right before surgery, and did not find any metastasis to my...

https://connect.mayoclinic.org/comment/902877/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 27, 2023

Surgery update: Kim had surgery today to remove remove remaining mass on pancreas, remove gall bladder,...

https://connect.mayoclinic.org/comment/819734/

Discussion: PNET Surgery: My recovery journey

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 2, 2023

Our case also was stage 4 with too many tumors on liver to count. Not eligible...

https://connect.mayoclinic.org/comment/1106247/

Discussion: Diagnosed with Stage 4 pancreatic neuroendocrine metastasized to liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 15, 2024

Primary NET in duodenum with Mets to liver and spine. No pain in my back, T-11...

https://connect.mayoclinic.org/comment/1199897/

Discussion: Anyone have a neuroendocrine tumor (NET) in the spine?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 29, 2024

@shirleyslominski 22 years is quite a while. That they didn't cause problems until 2024 is encouraging....

https://connect.mayoclinic.org/comment/1529891/

Discussion: Dealing with Lutathera treatments alone: Tips?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 18 12:12pm

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