Neuroendocrine Tumors (NETs) Support Group

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Comments (2,335)

What is your gastrin now? I too have gastrinomas I had a perforated esophagus I have...

https://connect.mayoclinic.org/comment/1330117/

Discussion: High or Fluctuating Chromogranin A Level: What does it mean?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 18, 2025

Hello @carm1011 and welcome to the NETs support group on Mayo Connect. I am glad that...

https://connect.mayoclinic.org/comment/890939/

Discussion: Diagnosed with Stage 4 pancreatic neuroendocrine metastasized to liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 6, 2023

My Journey of doctors and second opinions - Local Community PCP ordered Ultrasound because of Liver...

https://connect.mayoclinic.org/comment/842699/

Discussion: Has anyone chosen the Watch and Wait and regretted that choice?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 13, 2023

I had 60% of my colon removed 5 years ago. I am glad you caught it...

https://connect.mayoclinic.org/comment/1011779/

Discussion: NET in illeum, surgery or proper nutrition?!

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 8, 2024

@ahtaylor I was noticing that you were going to have a calcium stimulation test. Has that...

https://connect.mayoclinic.org/comment/839748/

Discussion: Recurrence in Liver after Whipple

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 8, 2023

Anyone taking this treatment for liver nets? What time of day did you take it? Side...

https://connect.mayoclinic.org/comment/1295469/

Discussion: Anyone have experience with cabozantinib (Cabometyx)?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 3, 2025

Did the cancer go into your veins like myself? My spleen, gall bladder, and liver are...

https://connect.mayoclinic.org/comment/1321081/

Discussion: PNET in Tail of Pancreas, Portal and Splenic Veins

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 5, 2025

That was 8/22 when I got diagnosed with a pancreatic NET that spread to my liver....

https://connect.mayoclinic.org/comment/935792/

Discussion: Follow up surgery for PNET

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 24, 2023

My experience is very similar to those of @firepowr. Three of the largest tumors in my...

https://connect.mayoclinic.org/comment/828121/

Discussion: High grade 2 and 3 neuroendocrine

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 18, 2023

@hollywood817 What prompted the biopsy, did You have imaging done before. I have plenty of liver...

https://connect.mayoclinic.org/comment/812431/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 16, 2023

I have pNET with liver metastases. I had leg swelling after my first CAPTEM treatment. It...

https://connect.mayoclinic.org/comment/883873/

Discussion: Anyone have swelling with liver metastases?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 23, 2023

@cindypat1 Let's see what happens in May. Keep positive thoughts. A grade 2 isn't the fastest...

https://connect.mayoclinic.org/comment/1518109/

Discussion: New spots showing up

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 2 6:10pm

I do not have experience with ostricide shots but usually given it prior to any medical...

https://connect.mayoclinic.org/comment/1266755/

Discussion: Liver function (birirubin, globulin, glucose, iron) and Octreotide

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 25, 2025

@jiamgmx: I want to personally thank you for your Histrotripsy consultation update. You have helped me...

https://connect.mayoclinic.org/comment/1189162/

Discussion: Has anyone out there tried Histotripsy for tumors in the liver?

Support Group: Liver Cancer

Posted: Dec 12, 2024

My wife was diagnosed with NET in April 2022, with mass on tail of pancreas, and...

https://connect.mayoclinic.org/comment/797689/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 16, 2023

Hi I had an exceptional NET specialist who started me Lanreotide after 3 injections the side...

https://connect.mayoclinic.org/comment/847916/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 23, 2023

My husband was diagnosed with GI tract stage 4 Neuroendocrine carcinoid tumor March,2022. He had surgery...

https://connect.mayoclinic.org/comment/1048670/

Discussion: Questions Regarding Results after PRRT Treatment

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 10, 2024

Thanks for your post melmangen. A hemangioma is like a birthmark. I have them on my...

https://connect.mayoclinic.org/comment/794072/

Discussion: NET (Lung + liver metastatis) Radical nephrectomy done for RCC

Support Group: Kidney Cancer

Posted: Jan 8, 2023

I'm sorry you have to through this. CT is a common imaging test. But MRI is...

https://connect.mayoclinic.org/comment/1350256/

Discussion: Has anyone had a CT Triple Phase Liver test after the removal of Net.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 17, 2025

As I said there have no treatments for the past 5 months. I did have Lanreotide...

https://connect.mayoclinic.org/comment/1209962/

Discussion: I am one year out with my diagnosis just finished 4th round of PRRT

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 12, 2025

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