Neuroendocrine Tumors (NETs) Support Group

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Comments (1,498)

I was diagnosed 17 months ago with a metastatic stage 4, grade 2-3 small intestinal NET....

https://connect.mayoclinic.org/comment/1165976/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 1 12:09am

Doctor was very dismissive. Had thyroid out due to covered with nodules 10 years ago. Also...

https://connect.mayoclinic.org/comment/905728/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 1, 2023

I was told surgery was not an option and I did not press for further explanation,...

https://connect.mayoclinic.org/comment/1000130/

Discussion: PNET on tail of pancreas with numerous bilobar hepatic metastases

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 19 1:03pm

I have heard of cases in excess of 20 years on SSA. I Believe Lano is...

https://connect.mayoclinic.org/comment/1011808/

Discussion: Statistics on progression free survival while on SSA / Lanreotide

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 8 9:34am

@cewald62, my wife has NET in the liver still after finding the primary tumor on the...

https://connect.mayoclinic.org/comment/1146827/

Discussion: After initial tests/consults at Mayo: When does NETs treatment start?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 24 5:56pm

Yes, I am. I have Stage Four carcinoid cancer. The original site was my ileum. It...

https://connect.mayoclinic.org/comment/988900/

Discussion: Laparoscopic Possible Open Surgery Resection - Small Bowel NETS

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 30, 2023

Does the nausea start with the “CAP” portion or only with the “TEM”? His doctor has...

https://connect.mayoclinic.org/comment/884044/

Discussion: Looking for information on CAPTEM treatment

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 24, 2023

Thankyou for asking, he’s doing well now, back to baseline after stopping his sandostatin injections. Just...

https://connect.mayoclinic.org/comment/1067948/

Discussion: Updating about My Lanreotide Injections & CT Scan

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 14 4:03pm

@aliatl I’ll try to keep it short, our diagnosis hopefully will help you some. My wife...

https://connect.mayoclinic.org/comment/823608/

Discussion: NET lung with Liver Metastasis (stage 4)

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 9, 2023

I was diagnosed with stage 4 Merkel cell carcinoma in Jan 2022 when I developed a...

https://connect.mayoclinic.org/comment/966112/

Discussion: Merkel Cell Carcinoma: I'd like to hear from others

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 16, 2023

Welcome @kate777, I can imagine that your terrified that Merkel cell may have spread. Spots on...

https://connect.mayoclinic.org/comment/777248/

Discussion: Merkel cell-radiation effective on chest-new 2 cm spot on liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 25, 2022

Hello Tom, @tomewilson Here are links to articles that I found about PRRT and radioembolization, https://link.springer.com/article/10.1007/s13139-014-0292-2...

https://connect.mayoclinic.org/comment/179460/

Discussion: Does Y-90 preclude PRRT?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 1, 2018

I am 69 years old and am diagnosed with multiple liver metastasis from lung carcinoid tumor....

https://connect.mayoclinic.org/comment/825019/

Discussion: Newly diagnosed-Primary Malignant Neuroendocrine of Lung

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 12, 2023

Maybe ask you doctor about everolimus. It seemed to help my husband but was at same...

https://connect.mayoclinic.org/comment/837879/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 5, 2023

@mollie59 Mollie, I'm so glad to get your report and to know how much progress you...

https://connect.mayoclinic.org/comment/182059/

Discussion: Mayo Presentation at the Northwoods NETs group - 1/14/18

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 25, 2018

My Chromogranin A was 1507 last year and the PET was negative. In February I was...

https://connect.mayoclinic.org/comment/880883/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 18, 2023

At the initial CT scan she had 10 hypodense lesions on her liver one measured 3.5...

https://connect.mayoclinic.org/comment/881571/

Discussion: My Sister and Best Friend

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 19, 2023

2 weeks after blan embolization of my liver left side severe pain in my left side...

https://connect.mayoclinic.org/comment/887516/

Discussion: Bland embolization or transarterial chemoembolization (TACE)

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 30, 2023

Living in Texas, MD Anderson is a great facility. I live in tulsa Oklahoma. I've also...

https://connect.mayoclinic.org/comment/933185/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 20, 2023

I know I still have lesions on my liver, not sure on pancreas. For me it...

https://connect.mayoclinic.org/comment/836863/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 3, 2023