Neuroendocrine Tumors (NETs) Support Group

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Comments (2,058)

Greetings! Thanks for the post. I am happy to connect with you. I have been dealing...

https://connect.mayoclinic.org/comment/799602/

Discussion: Pancreatic NETs: Looking to connect with anyone with insulinoma

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 21, 2023

Hi I feel every bite of your trails I traveled almost the same road , misdiagnosed...

https://connect.mayoclinic.org/comment/792778/

Discussion: Frustrated with the medical establishment

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 5, 2023

Hi Colleen, I've had 2 gallium 68 PET scans, one before my right hemicolectomy surgery in...

https://connect.mayoclinic.org/comment/637399/

Discussion: Possible NET with No Evidence of Tumor: Mediastinal Mass

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 20, 2021

My primary was a tumor wrapped around my small intestine, discovered in 2007. I have been...

https://connect.mayoclinic.org/comment/898391/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 19, 2023

Hello, mamandneuroendocrine! I was in a similar situation. My pNET was discovered accidentally during a stroke...

https://connect.mayoclinic.org/comment/953478/

Discussion: Metastatic NeuroEndocrine Grade 3 - ki 80% -

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 25, 2023

I was diagnosed with Pancreatic Acinar Cell Carcinoma in June 2012 with the tumor 4cmx3cmx3cm on...

https://connect.mayoclinic.org/comment/1059508/

Discussion: Anyone have Pancreatic Acinar Cell Carcinoma?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 30, 2024

The first embolization I felt nothing and the doctor told me he was worried I’d be...

https://connect.mayoclinic.org/comment/1048341/

Discussion: Spreading NET

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 10, 2024

Going for my 3rd injection of 120 mg Lanreotide next week. No facial or lip sores....

https://connect.mayoclinic.org/comment/1119417/

Discussion: Facial and lip sores from lanreotide injections for NETs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 7, 2024

I, experienced weight gain, depression, and muscle soreness. I was also lethargic, often lacking the energy...

https://connect.mayoclinic.org/comment/805097/

Discussion: Gynecologic neuroendocrine metastasized to lungs: Need a specialist

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 1, 2023

Thank you Giness for your kind words. Yes, it is scary esp when there is no...

https://connect.mayoclinic.org/comment/764699/

Discussion: Prognosis for Metastasized NET

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 23, 2022

Hello @christine714 I would like to join @colleenyoung and @sophiarose in welcoming you to Connect. I...

https://connect.mayoclinic.org/comment/750331/

Discussion: Newly diagnosed with NET in liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 16, 2022

Since my diagnosis in 2002 at Mayo Clinic, I have had surgery to remove appendix, gallbladder,...

https://connect.mayoclinic.org/comment/137542/

Discussion: My Husband was newly diagnosed with Carcinoid Cancer

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 15, 2017

I was diagnosed with carcinoid cancer in 2003. I am still receiving 1 sandostation injection every...

https://connect.mayoclinic.org/comment/773744/

Discussion: Carcinoid Tumorlets Neuroendocrine tumor/Cell Hyperplasia - DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 16, 2022

I understand that metastasis means it's spread. What bothers me is his initial oncologist told him...

https://connect.mayoclinic.org/comment/762162/

Discussion: Prognosis for Metastasized NET

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 17, 2022

Hi @hopeful33250. Our story is a lot of drama so far. Around Christmas my husband had...

https://connect.mayoclinic.org/comment/872940/

Discussion: Carcinoid liver cancer/carcinoid heart disease/ kidney damage

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 5, 2023

Im not sure. All I know is I had neuroendocrine cancer spread to my liver as...

https://connect.mayoclinic.org/comment/1289961/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 25 8:11pm

I'm glad that my description of the "day in the life of Lutethera " will help...

https://connect.mayoclinic.org/comment/995251/

Discussion: Update: Lutethera treatment is over

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 10, 2024

Original site small intestine/appendix with first surgery in 2004 (they thought it was an appendicitis but...

https://connect.mayoclinic.org/comment/1233382/

Discussion: How does Alcohol use affect Liver NET?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 10 3:55am

@briea Welcome to the Mayo Clinic Connect. You will find lots of support and people who...

https://connect.mayoclinic.org/comment/914666/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 17, 2023

I discovered by a self orderded MRI in Mar. of 2023 that I had Nets. I...

https://connect.mayoclinic.org/comment/1195148/

Discussion: Living with Neuroendocrine NETS, any advice?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 22, 2024

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