Neuroendocrine Tumors (NETs) Support Group

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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

Oh my goodness! I'm so sorry you have to go through this. It sounds like you...

https://connect.mayoclinic.org/comment/1332307/

Discussion: Stage 4 grade2 Pancreatic Neuroendocrine ki67 20% Lanreotide

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 21 9:04pm

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, 2024

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, 2024

@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

Same here the fatigue had me sleeping thru life last 2 1/2 plus years. Reaction of...

https://connect.mayoclinic.org/comment/1308411/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 20 9:17am

I was diagnosed with NET’s a little over 2 years ago . Very fortunate to have...

https://connect.mayoclinic.org/comment/1233407/

Discussion: I have recently been diagnosed with my third neuroendocrine tumor

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 10 6:41am

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, 2024

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

I had a bout of embolization, but no cutting. The primary has not been touched at...

https://connect.mayoclinic.org/comment/1232981/

Discussion: Lanreotide Question

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 9 11:53am

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

Hi, I’m Alina from Sherman Oaks in the San Fernando Valley near LA. After two years...

https://connect.mayoclinic.org/comment/1170361/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 8, 2024

@rww1979, Joe Tippens protocol appears again and again in forums and social media. It is important...

https://connect.mayoclinic.org/comment/1295985/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 3 6:27pm

My NET started in the pancreas (though I don't have pancreatic cancer) and migrated to the...

https://connect.mayoclinic.org/comment/1150696/

Discussion: Straight to the liver: Anyone have NETs originating in strange areas?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 2, 2024

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