Neuroendocrine Tumors (NETs) Support Group

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Comments (2,337)

I have pancreas to liver NET. The chemotherapy drug I was on was Flofox and a...

https://connect.mayoclinic.org/comment/825587/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 13, 2023

Well I got my news early and the 2 cm spot on my liver is indeed...

https://connect.mayoclinic.org/comment/783362/

Discussion: Merkel cell-radiation effective on chest-new 2 cm spot on liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 10, 2022

P.S. I was given 3 to 5 years initially. A lot of what oncologists say about...

https://connect.mayoclinic.org/comment/772405/

Discussion: Prognosis for Metastasized NET

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 12, 2022

Hi, I have Landrotide injection every month from August /2022, only skip it when I have...

https://connect.mayoclinic.org/comment/1302197/

Discussion: Any one with Neuroendocrine tumors getting the shot once a month?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 12, 2025

I am curious as to your symptoms. I have stage 4?carcinoid metastasis in the liver and...

https://connect.mayoclinic.org/comment/1266749/

Discussion: Grade 3, poorly differentiated duodenal NET metastasized to liver-

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 25, 2025

Well differentiated, grade 2, neuroendocrine tumors in tail of pancreas and spread to some lobes of...

https://connect.mayoclinic.org/comment/1265518/

Discussion: Well differentiated Neuroendocrine Grade 2 in rectum

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 24, 2025

Hi. I have a loved one who is dealing stage IV liver tumor. They're in so...

https://connect.mayoclinic.org/comment/1198390/

Discussion: Anyone had plexus nerve block for cancer pain?

Support Group: Pancreatic Cancer

Posted: Dec 27, 2024

Thank you. I’ve heard so many good things about Dr Sonbol and I’m feeling really comfortable...

https://connect.mayoclinic.org/comment/858487/

Discussion: Just diagnosed: Metastatic NETs. Treatment?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 12, 2023

My wife has stage 4 technically with mass on pancreas and metastasis on liver. But after...

https://connect.mayoclinic.org/comment/843780/

Discussion: High grade 2 and 3 neuroendocrine

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 15, 2023

@kim1965 That is great to hear about how well treatment has gone for your wife. My...

https://connect.mayoclinic.org/comment/834225/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 29, 2023

At 14 cm and 3% ki67 that thing was most likely there a loooooong ttime. The...

https://connect.mayoclinic.org/comment/1349618/

Discussion: 14 CM PNET w/ one year post resection. When will I see reoccurrence?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 16, 2025

@splendrous While I don't have liver METs, I do have many pancreatic cysts. Every other year...

https://connect.mayoclinic.org/comment/1216663/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 19, 2025

I will be having another MRI 2/29/24. My last one was Feb 2023. I have multiple...

https://connect.mayoclinic.org/comment/1003831/

Discussion: PNET on tail of pancreas with numerous bilobar hepatic metastases

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 25, 2024

A quick update for my wife is doing ok, 90 day checkup after surgery showed no...

https://connect.mayoclinic.org/comment/907311/

Discussion: Interested in hearing people's experiences with PRRT

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 3, 2023

I had emergency surgery in Dec of 2020. That is when the tumors were found. However,...

https://connect.mayoclinic.org/comment/728274/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 18, 2022

@doonman , Lanreotide does not shrink tumors, just stabilize the disease. It is the " tool...

https://connect.mayoclinic.org/comment/1448676/

Discussion: Anyone had positive results from Lanreotide injections?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 28, 2025

@lindabees Wow. Thank you for the respond. 5 years ago I had mini Whipple(PNET). A month...

https://connect.mayoclinic.org/comment/1408178/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 4, 2025

What are your thoughts on having SBRT performed on a handful of small liver lesions and...

https://connect.mayoclinic.org/comment/1313342/

Discussion: Pancreatic Cancer Q&A with Dr. Stauffer, Mayo Surgeon: Archive

Support Group: Pancreatic Cancer

Posted: May 26, 2025

Was it as large? His is 6.7 mm. What was your symptoms? Did you have multiple...

https://connect.mayoclinic.org/comment/1230654/

Discussion: Adrenocortical carcinoma (ACC) outcomes: What to expect?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 6, 2025

That's fantastic news! The CAP/TEM combo has also worked well for us also. We got 80%...

https://connect.mayoclinic.org/comment/844065/

Discussion: Keep Fighting

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 16, 2023

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