Neuroendocrine Tumors (NETs) Support Group

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@dadcue i would do the scan so if you actually do have a net/s you can...

https://connect.mayoclinic.org/comment/1523385/

Discussion: Diagnosis Frustrated: How you were diagnosed with NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 9 3:13pm

@nannybb I on Medicare they would only approve the long term my RX insurance wouldn’t approve...

https://connect.mayoclinic.org/comment/1540439/

Discussion: Diagnosis Frustrated: How you were diagnosed with NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: 6 days ago

Might I suggest you get a 2nd opinion? It's just a thought. Also, possibly speak with...

https://connect.mayoclinic.org/comment/1072193/

Discussion: Spreading NET

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 21, 2024

My wife’s case is similar to yours, as she was diagnosed with NET in April 2022....

https://connect.mayoclinic.org/comment/971625/

Discussion: Found PNET on tail of pancreas but told it’s nonfunctional

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 28, 2023

My hubs was diagnosed in 2019 with an intestinal blockage. Surgery revealed he had the NET...

https://connect.mayoclinic.org/comment/899657/

Discussion: 4 treatment options from my doctor, which one should I start with?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 21, 2023

Update on Captem and Y90. After the 3 month mark, they had xaid the tumors in...

https://connect.mayoclinic.org/comment/1531803/

Discussion: Y90 AND Captem Combo

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 21 3:42am

My oncologist does really look at SUVs he said their are too many variables that can...

https://connect.mayoclinic.org/comment/1512625/

Discussion: Post PRRT & Post SPECT - Quantitative Response

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 23 8:27am

@sturns Are the numerous tumors in your liver and lymph glands related to the pituitary tumor?...

https://connect.mayoclinic.org/comment/780276/

Discussion: Pituitary tumor symptoms: joint, muscle and body aches

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 2, 2022

STOMACH NET! Having a STOMACH NET is indeed an esoteric experience and different from the lung,...

https://connect.mayoclinic.org/comment/896811/

Discussion: Anyone have a stomach NET?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 16, 2023

I also have pnets on the tail end of my pancreas and liver I'm stage 4,,...

https://connect.mayoclinic.org/comment/801955/

Discussion: Just diagnosed with pancreatic NET stage 1

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 26, 2023

I was diagnosed with neuroendocrine metastic to the liver and 1 lymph node with pancreatic primary...

https://connect.mayoclinic.org/comment/881040/

Discussion: Diagnosed with Stage 4 pancreatic neuroendocrine metastasized to liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 19, 2023

You may find this recent study helpful: https://pubmed.ncbi.nlm.nih.gov/36260828/ My wife has a large grade 2 pancreatic...

https://connect.mayoclinic.org/comment/933065/

Discussion: Diagnosed with Stage 4 pNET: What should I know?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 20, 2023

Hi there Vinnie, I was recently diagnosed with the same, metastasized to liver. Did you have...

https://connect.mayoclinic.org/comment/903584/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 28, 2023

I have been on Lanreotide injections since March 2023. I have Stage 4 pNET with liver...

https://connect.mayoclinic.org/comment/899254/

Discussion: First Lanreotide Injection: Any tips about diet and side effects?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 20, 2023

Thank you for your post. I have small bowel primary NETs with liver met only diagnosed...

https://connect.mayoclinic.org/comment/786233/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 18, 2022

This was very interesting. My SIL has NET in liver (started in pancreas). She is doctoring...

https://connect.mayoclinic.org/comment/761053/

Discussion: Neuroendocrine Carcinoma with Liver Metastasis

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 14, 2022

I was diagnosed 5 yrs ago. It has metasticised to my liver and bones and spine/...

https://connect.mayoclinic.org/comment/929034/

Discussion: Diagnosed with Stage 4 pNET: What should I know?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 12, 2023

Hi, I had a ct scan for something else and many tumors showed up in the...

https://connect.mayoclinic.org/comment/1371172/

Discussion: Surgery on Small Intestine

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 15, 2025

I have neuroendocrine lung cancer stage 4, grade 1. Liver and bone nets. I've gotten good...

https://connect.mayoclinic.org/comment/1227132/

Discussion: 4 treatment options from my doctor, which one should I start with?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 1, 2025

I was diagnosed with Metastatic P-NET VIPoma in 2019. I had surgery to remove a part...

https://connect.mayoclinic.org/comment/791950/

Discussion: NET-VIPoma pancreatic tumors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 3, 2023

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