Neuroendocrine Tumors (NETs) Support Group

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I too am Atypical lung net. It has spread to liver and several vertebrae in my...

https://connect.mayoclinic.org/comment/939666/

Discussion: Atypical Lung NET treated with radiation: What was your outcome?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 1, 2023

Hello, My husband also has insulinoma. Pancreas metastasized to liver. We have found that a tablespoon...

https://connect.mayoclinic.org/comment/890321/

Discussion: NET - Insulinoma

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 5, 2023

Your response is sincerely appreciated - My wife is scheduled for PRRT @Fred Hutch Seattle on...

https://connect.mayoclinic.org/comment/808550/

Discussion: Interested in hearing people's experiences with PRRT

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 9, 2023

4 nights in the hospital after the surgery. Eating mostly plant based diet plus fish. No...

https://connect.mayoclinic.org/comment/853249/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 2, 2023

Thanks for the feedback firepower. I also have grade 3 Ki67 of 42 and am looking...

https://connect.mayoclinic.org/comment/828496/

Discussion: High grade 2 and 3 neuroendocrine

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 19, 2023

@stevestenberg31 he did last week! Unfortunately not enough uptake of the tracer so PRRT is not...

https://connect.mayoclinic.org/comment/824943/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 12, 2023

I was dx in may with net in small intestine tumor was removed but pep scan...

https://connect.mayoclinic.org/comment/758557/

Discussion: Prognosis for Metastasized NET

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 7, 2022

It depends on the tumor type, biology, location, and treatment response. Overall, liver lesions are very...

https://connect.mayoclinic.org/comment/1315821/

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

Support Group: Pancreatic Cancer

Posted: May 29, 2025

I was diagnosed in Jan. with pancreatic tumors in the tail of my pancreas that has...

https://connect.mayoclinic.org/comment/1268556/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 28, 2025

Welcome, @amani79. Glad you joined us here. I am a moderator on this site, but on...

https://connect.mayoclinic.org/comment/163138/

Discussion: How to get a second opinion for an international patient??

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 10, 2017

I don't know your story... sorry. I got progressively sicker for over 3 years before finally...

https://connect.mayoclinic.org/comment/936712/

Discussion: Type 1 Neuroendocrine Tumor with no risk: What should I ask doctor?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 26, 2023

I didn’t have a whipped but have a pancreatic tumor and numerous liver tumors. I also...

https://connect.mayoclinic.org/comment/934278/

Discussion: Ways to control hypoglycemia caused by insulinoma in pancreas?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 22, 2023

They found a number of NET's on a standard CT scan done in March 2025 based...

https://connect.mayoclinic.org/comment/1384956/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 2, 2025

I've been on the same journey. Diagnosed March 2024 with PNETS.... Grade 2, Stage 4 metastasis...

https://connect.mayoclinic.org/comment/1333049/

Discussion: First scan after 3 months of lanreotidec

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 22, 2025

I have just been diagnosed with NET tumors in my abdomen and am starting with MRI's,...

https://connect.mayoclinic.org/comment/1454524/

Discussion: Cost of treatment

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 6, 2025

@k8lyn23 i was diagnosed on 1/5/23 via a biopsy with approx 25 cancerous lesions on my...

https://connect.mayoclinic.org/comment/812349/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 16, 2023

In my opinion, you have the right attitude! Someone somewhere has it worse than we do....

https://connect.mayoclinic.org/comment/1206709/

Discussion: Living with Neuroendocrine NETS, any advice?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 8, 2025

I have this disease and had my last chemo infusion was 3 wks. ago. They lasted...

https://connect.mayoclinic.org/comment/1059061/

Discussion: Anyone have Pancreatic Acinar Cell Carcinoma?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 28, 2024

Hi everyone, I’m a 59 old male who was diagnosed with stage 4 Neuroendocrine/ acinar cancer...

https://connect.mayoclinic.org/comment/796920/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 15, 2023

Hi, 1 year ago I had surgery to remove two liver mets. My surgeon said that...

https://connect.mayoclinic.org/comment/758820/

Discussion: Long Time Survivor With Concerns re Metastasis

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 8, 2022

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