Neuroendocrine Tumors (NETs) Support Group

Public Support Group

Follow for updates

Search discussions

Start a new discussion

1,626 total results

Comments (1,498)

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

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

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

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 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

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

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 7:03pm

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

I feel like he has just given up. He has constant diareaha that only slows down...

https://connect.mayoclinic.org/comment/873195/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 5, 2023

I took immunotherapy I was diagnosed in June of 23 with Merkel cell carcinoma it was...

https://connect.mayoclinic.org/comment/1172429/

Discussion: Anyone living long-term with DIPNECH on lungs?

Support Group: Neuroendocrine Tumors (NETs)

Posted: 5 days ago

To jls77 It sounds like you're wanting to know about people's experiences w paragangliomas. In April...

https://connect.mayoclinic.org/comment/1164658/

Discussion: Paraganglioma

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 29 11:49am

Hi @marciamiller I also have DIPNECH and lung NETS (cancer). I’m guessing you saw Dr. Ramirez....

https://connect.mayoclinic.org/comment/1162740/

Discussion: Anyone have side effects after Lanreotide injection?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 25 4:21pm

I just found out I have a second and maybe third paraganglioma, carotid body tumor, this...

https://connect.mayoclinic.org/comment/1163726/

Discussion: Paraganglioma

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 27 8:04pm

Hello @wilhelm and welcome to Mayo Connect. I appreciate your thoughtful comments about this rare disorder...

https://connect.mayoclinic.org/comment/1165843/

Discussion: Paraganglioma

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 31 1:55pm

@wilhelm I strongly agree w Teresa, Volunteer Mentor. When my NET on my carotid artery was...

https://connect.mayoclinic.org/comment/1166076/

Discussion: Paraganglioma

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 1 8:11am

Yes, they want to do a needle biopsy. They say there slow growing so they want...

https://connect.mayoclinic.org/comment/1169811/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 7 9:59pm

Hello All .My name is Ladonna I live in Az now so went to seed Doctor...

https://connect.mayoclinic.org/comment/1173048/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: 4 days ago

I appreciate your kind remarks, @pamela1685. So many of on Connect have experienced a myriad of...

https://connect.mayoclinic.org/comment/1173905/

Discussion: How many doctors did you see to get to your NETS diagnosis?

Support Group: Neuroendocrine Tumors (NETs)

Posted: 3 days ago

Dear puddknocker, I had a big para in the skull base in the vagus nerve, I...

https://connect.mayoclinic.org/comment/856706/

Discussion: Paraganglioma / Carotid Body Tumor Question

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 8, 2023

Breast Cancer

5512

8 minutes ago

Adolescent & Young Adult (AYA) Cancer

537

23 minutes ago

Pancreatic Cancer

2235

33 minutes ago

Visiting Mayo Clinic

4523

1 hour ago

Cancer

6930

1 hour ago