Neuroendocrine Tumors (NETs) Support Group

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Hello @gtassithomas I see that this is your first post in the NET discussion group. I...

https://connect.mayoclinic.org/comment/260957/

Discussion: Carcinoid syndrome symptoms

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 2, 2019

Hello! My name is Karla and I live in SW MO near Branson. I’m 52 years...

https://connect.mayoclinic.org/comment/787752/

Discussion: Anyone out there have PNET experiences and outcomes to share?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 22, 2022

Thats exactly what I was saying. I tried it after being given 12 weeks and being...

https://connect.mayoclinic.org/comment/1290468/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 26 12:34pm

Hi there, fist off.. fellow Wisconsinite.....GoPackGo. back to the NETS. My hubs was diagnosed back in...

https://connect.mayoclinic.org/comment/1231196/

Discussion: New Diagnosis: husband's labs are all indicating NET

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 7 1:58am

Wow! Let me saw that I was treated like a rock star at Mayo in Jacksonville....

https://connect.mayoclinic.org/comment/770718/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 8, 2022

Hello, Thanks for reaching out. Truthfully? I am lost. I think I am okay, other than...

https://connect.mayoclinic.org/comment/758341/

Discussion: Paraganglioma / Carotid Body Tumor Question

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 7, 2022

Thank you and congratulations on living with this monster. I am USUALLY an upbeat optimistic person...

https://connect.mayoclinic.org/comment/881074/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 19, 2023

I am a year and six month passed first surgery, big neck job. Endocrinologists at Cleveland...

https://connect.mayoclinic.org/comment/1298847/

Discussion: What should I do? Carcinoid symptoms but no answers.

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 7 9:00am

I have been dealing with carcinoid tumors for 19 and a half years and am a...

https://connect.mayoclinic.org/comment/772394/

Discussion: Prognosis for Metastasized NET

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 12, 2022

After a lot of tests, scans and different doctors over the course of the last year,...

https://connect.mayoclinic.org/comment/912620/

Discussion: Anyone with an insulinoma have only therapies instead of surgery?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 14, 2023

I was scheduled for an incisional hernia repair and removing the adrenal tumor and gland was...

https://connect.mayoclinic.org/comment/1231115/

Discussion: Adrenocortical carcinoma (ACC) outcomes: What to expect?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 6 8:38pm

In 2019 I had to have a pet scan because I was having liver issues -...

https://connect.mayoclinic.org/comment/1056651/

Discussion: Lung nodule could be slow growing carcinoid: Watch and wait is scary

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 24, 2024

Thank you! I was going to attend the zoom last night but ended up being in...

https://connect.mayoclinic.org/comment/907702/

Discussion: Anyone with an insulinoma have only therapies instead of surgery?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 4, 2023

I was diagnosed with Carcinoid Cancer with Carcinoid Syndrome in 2003. By that time I was...

https://connect.mayoclinic.org/comment/741205/

Discussion: Treatments for Carcinoids

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 24, 2022

Thanks for your reply. I live in Canada. We dont do medical insurance unless we travel...

https://connect.mayoclinic.org/comment/1388073/

Discussion: I saw the surgeon. More confused than ever.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 6 1:12pm

I just started this same journey a couple of months ago. I chose not to do...

https://connect.mayoclinic.org/comment/1396618/

Discussion: My carcinoid tumor is inoperable: What are the best ways to control?

Support Group: Neuroendocrine Tumors (NETs)

Posted: 6 days ago

Hi , welcome to the DIPNECH club 🥴. You’ve come to the right place! I also...

https://connect.mayoclinic.org/comment/1392355/

Discussion: Biopsy showed DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 12 1:18pm

For those of you interested in learning more about PRRT, you might find this webinar interesting....

https://connect.mayoclinic.org/comment/1398943/

Discussion: PRRT Question

Support Group: Neuroendocrine Tumors (NETs)

Posted: 2 days ago

Yes, sometimes NETs are found with CT scans but it takes more than that to confirm...

https://connect.mayoclinic.org/comment/1383551/

Discussion: Has anyone had NET show up on CT scan, I had CT scan in 23

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 31 1:46pm

Many thanks to each of you for weighing in. I live on the east coast, about...

https://connect.mayoclinic.org/comment/1392953/

Discussion: Biopsy showed DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 13 2:15pm

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