Neuroendocrine Tumors (NETs) Support Group

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Comments (1,498)

I just learned I have a prostate neuroendocrine tumor I did the urine test first by...

https://connect.mayoclinic.org/comment/756090/

Discussion: Just got the news… stage 2 Carcinoid tumors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 2, 2022

Digestion issues are different for everyone. I had about a yard of small intestine removed and...

https://connect.mayoclinic.org/comment/879118/

Discussion: NETs: Scheduled for small intestine resection: What to expect?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 15, 2023

Thank you so much for your input. We are working with a team at Cancer Specialists...

https://connect.mayoclinic.org/comment/860243/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 15, 2023

Thank you for sharing your experience. As I read your story it seemed just as complicated...

https://connect.mayoclinic.org/comment/834742/

Discussion: Carcinoid Tumorlets Neuroendocrine tumor/Cell Hyperplasia - DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 30, 2023

Hi All, I too see Dr. Sonbol at Mayo Arizona and love him and the team....

https://connect.mayoclinic.org/comment/1123480/

Discussion: Everolimus for multiple Neuroendocrine tumors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 14 9:38am

Hi: I completed the full 4 PRRT treatments in January of this year and had my...

https://connect.mayoclinic.org/comment/728904/

Discussion: PRRT for NETs: Questioning whether I should continue or not

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 20, 2022

Hello @carrie55 and welcome to Connect. I'm sorry to hear of this new diagnosis and the...

https://connect.mayoclinic.org/comment/753146/

Discussion: Neuroendocrine Carcinoma with Liver Metastasis

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 23, 2022

Yes what Teresa said is helpful. Hang in there🙏. I too had similar symptoms and lost...

https://connect.mayoclinic.org/comment/943329/

Discussion: NETs: Scheduled for small intestine resection: What to expect?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 6, 2023

Hello @kaforester3, I can understand your concerns, especially when your doctor does not give you much...

https://connect.mayoclinic.org/comment/308776/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 25, 2020

@mbg20 my primary oncologist is Dr Dar (primary office is in Leesburg, VA). Dar was recommended...

https://connect.mayoclinic.org/comment/820306/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 3, 2023

I have pancreatic NETS that have spread to my liver. I was diagnosed in August. I...

https://connect.mayoclinic.org/comment/818762/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 28, 2023

Hi @casualsuman and @sanjaykumar1. It looks like you may have created 2 accounts - Perhaps son...

https://connect.mayoclinic.org/comment/761776/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 16, 2022

I’ve gone through four embolization procedures on my liver and I’m down to my last one...

https://connect.mayoclinic.org/comment/1047618/

Discussion: Spreading NET

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 8 10:22pm

I have two carcinoid tumors on my liver and they have been there for many years....

https://connect.mayoclinic.org/comment/1111420/

Discussion: NET on liver: Question about treatments when no symptoms

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 25 7:36am

Lenora, Thank you so much! My husband is actually PNET I guess? It started in his...

https://connect.mayoclinic.org/comment/669949/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 11, 2022

Welcome to Connect, @worriedlovingwife I am sorry that you found us under such stressful circumstances. I...

https://connect.mayoclinic.org/comment/292369/

Discussion: Multiple Endocrine Neoplasia 1 (MEN1): What treatments have you had?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 11, 2020

Dr. Sonbol and his team saved my life. So, I am biased. By the time that...

https://connect.mayoclinic.org/comment/981090/

Discussion: NET symptoms despite follow-up lab work ok

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 15, 2023

I to had my first Lanreotide injection on July 6th after having pancreatic cancer surgery in...

https://connect.mayoclinic.org/comment/898534/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 19, 2023

Hi Linda How did your scan go? Lots has happened since my last post. I had...

https://connect.mayoclinic.org/comment/837244/

Discussion: Recurrence in Liver after Whipple

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 4, 2023

Yes it was incidental, just like my original diagnosis. In April of 2017 we were in...

https://connect.mayoclinic.org/comment/877828/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 13, 2023