Neuroendocrine Tumors (NETs) Support Group

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I have been going through the same thing! Symptoms but I get no answers. My doctors...

https://connect.mayoclinic.org/comment/934493/

Discussion: Carcinoid syndrome; NET not found

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 22, 2023

I can truly empathize as I have been living the same nightmare since last November. I...

https://connect.mayoclinic.org/comment/932111/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 18, 2023

That’s good news. Sounds like it was caught early. Like I said we all have different...

https://connect.mayoclinic.org/comment/913622/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 15, 2023

@briea You mentioned that you were thinking about another opinion. I would highly recommend that. You...

https://connect.mayoclinic.org/comment/913563/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 15, 2023

My best advice is to have the surgery if your doctor recommends it. Don't be afraid...

https://connect.mayoclinic.org/comment/902822/

Discussion: What do I need to know about NETS?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 26, 2023

Aww thank uuu!! I'm going to try and keep smiling thru this and fighting for ALL...

https://connect.mayoclinic.org/comment/901285/

Discussion: Finally got my NETSPOT Scan approved by my medical insurance

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 24, 2023

Chocolate and I are really good friends, and I refuse to give up my simple pleasures!...

https://connect.mayoclinic.org/comment/898928/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 20, 2023

@ronjake, I’ve been on injections of Octreotide for 5+ years and only had a lump twice...

https://connect.mayoclinic.org/comment/898742/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 19, 2023

I go to KU Med, and they have always scheduled my PET scans for the day...

https://connect.mayoclinic.org/comment/896642/

Discussion: How long do I wait between injections and PET scans.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 16, 2023

Ask your doctors about adding Temozolimide to your regimen. It is an oral chemotherapy that is...

https://connect.mayoclinic.org/comment/885907/

Discussion: Diagnosed with Stage 4 pancreatic neuroendocrine metastasized to liver

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 27, 2023

I am feeling pretty well thank you. Came back from a 3 mile hike with my...

https://connect.mayoclinic.org/comment/881898/

Discussion: My Sister and Best Friend

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 20, 2023

I’m well. Thank you for checking. I just had a scan in Rochester that they said...

https://connect.mayoclinic.org/comment/879762/

Discussion: Should I see a NET specialist?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 16, 2023

I had my first visit today with one of the smartest, intuitive doctors I’ve ever been...

https://connect.mayoclinic.org/comment/873214/

Discussion: Neuroendocrine tumor and carcinoid tumor

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 5, 2023

My son in law had is spleen removed at a very young age due to an...

https://connect.mayoclinic.org/comment/857839/

Discussion: Has anyone chosen the Watch and Wait and regretted that choice?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 10, 2023

What a remarkable story of your journey with paraganglioma, @patriciagsr. You have certainly been proactive in...

https://connect.mayoclinic.org/comment/857217/

Discussion: Paraganglioma / Carotid Body Tumor Question

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 9, 2023

Welcome @helloitsme, so glad you reached out to this group. I’m also glad to hear you’re...

https://connect.mayoclinic.org/comment/851440/

Discussion: Just diagnosed: Metastatic NETs. Treatment?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 29, 2023

Hi @helloitsme, your reaction to finding out you have NETs is normal. Even though NETs is...

https://connect.mayoclinic.org/comment/851198/

Discussion: Just diagnosed: Metastatic NETs. Treatment?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 29, 2023

Hello, I had a 6.8cm pheochromocytoma and had a right adrenalectomy March 17th. My scans do...

https://connect.mayoclinic.org/comment/846343/

Discussion: What do I need to know about NETS?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 20, 2023

It was very helpful and encouraging to read your comments . I have not met or...

https://connect.mayoclinic.org/comment/845625/

Discussion: New DIPNECH diagnosis, need advice on doctors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 19, 2023

A gentle reminder about the Community Guidelines https://connect.mayoclinic.org/blog/about-connect/tab/community-guidelines/#ch-tab-navigation In particular I'd like to point out guidelines...

https://connect.mayoclinic.org/comment/838930/

Discussion: Just diagnosed with pancreatic NET stage 1

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 6, 2023

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