Neuroendocrine Tumors (NETs) Support Group

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Hi my mom has NET in her uterus that also mastiszed to lungs. I am sitting...

https://connect.mayoclinic.org/comment/799134/

Discussion: Neuroendocrine tumor: What tests are used for diagnosis?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 20, 2023

I have “innumerable” (probably about 80) liver mets. Unknown origin. Diagnosed January 2020. Grade 2/3, well-differentiated....

https://connect.mayoclinic.org/comment/796179/

Discussion: What topics do you want for the Neuroendocrine Support Group?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 13, 2023

I’ve had hiccups and belching since i started chemo/immuno. No radiation. I think it’s the drugs...

https://connect.mayoclinic.org/comment/759071/

Discussion: Have you ever had hiccups with or after chemotherapy?

Support Group: Cancer: Managing Symptoms

Posted: Oct 9, 2022

@tomrennie That is amazing I hope this does not happen often. I would imagine there would...

https://connect.mayoclinic.org/comment/1439368/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 15, 2025

@nannybb I just copied this from Mayo's website: Carcinoid tumors are a type of slow-growing cancer...

https://connect.mayoclinic.org/comment/1430781/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 4, 2025

The transplant was not done at Mayo, at Froedtert Hospital in Milwaukee, WI. The recovery has...

https://connect.mayoclinic.org/comment/1366630/

Discussion: Interested in your experience with treatments of PRRT vs surgery

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 8, 2025

I was diagnosed Jan 2020, grade 3 (ki67 17-29%), well differentiated, unknown primary, mets to liver...

https://connect.mayoclinic.org/comment/1334187/

Discussion: Everolimus/ Afinitor experience/side effects

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 24, 2025

In follow up visits I have learned that the veins in my chest are scarred and...

https://connect.mayoclinic.org/comment/1329280/

Discussion: Blood Clots, DVT and Neuroendocrine Cancer - Be aware.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 17, 2025

I was diagnosed with Pancreatic adenocarcinoma. Stage IV, metastasis to lungs and have had 70 treatments...

https://connect.mayoclinic.org/comment/1314871/

Discussion: Pancreatic Cancer Q&A with Dr. Stauffer, Mayo Surgeon: Archive

Support Group: Pancreatic Cancer

Posted: May 28, 2025

Slowly we are getting the pieces of the puzzle to find out the staging. Tumor is...

https://connect.mayoclinic.org/comment/1290587/

Discussion: Son, 48 diagnosed with PNET pancreatic cancer 8cm tail & spleen

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 26, 2025

@splendrous, my oncologist is located at the Springfield Clinic Cancer Center. My oncology surgeon is located...

https://connect.mayoclinic.org/comment/1275161/

Discussion: Tumor growth in three month follow up MRI

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 5, 2025

Good morning!!! As I mentioned above, I was diagnosed January 2020, grade 3 (Ki67 17-29 depending...

https://connect.mayoclinic.org/comment/1247365/

Discussion: Anyone have experience with cabozantinib (Cabometyx)?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 28, 2025

Hello @panorman3 and welcome to the NETs support group on Mayo Connect. You say in your...

https://connect.mayoclinic.org/comment/1247054/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 28, 2025

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, 2025

My fiance was diagnosed with NETs in Sept of this year after 3 ED visits with...

https://connect.mayoclinic.org/comment/1197766/

Discussion: Anyone have a neuroendocrine tumor (NET) in the spine?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 27, 2024

Hi! I was recently… finally diagnosed with DIPNECH. I am 69 and probably have had this...

https://connect.mayoclinic.org/comment/1173598/

Discussion: New DIPNECH diagnosis, need advice on doctors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 14, 2024

Hello @aulynn and welcome to the NETs support group on Mayo Connect. I'm so glad that...

https://connect.mayoclinic.org/comment/1161114/

Discussion: New DIPNECH diagnosis, need advice on doctors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 22, 2024

I just had scans on Monday. Everything is stable, and they even noted some shrinkage in...

https://connect.mayoclinic.org/comment/1123512/

Discussion: Everolimus for multiple Neuroendocrine tumors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 14, 2024

Hello @lrittmiller and welcome to the NETs support group on Mayo Connect. We have many members...

https://connect.mayoclinic.org/comment/1107836/

Discussion: DIPNECH (diffuse idiopathic pulmonary neuroendocrine cell hyperplasia)

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 18, 2024

Hi @gapsc, welcome back. Great to get an update from you. You'll notice I moved your...

https://connect.mayoclinic.org/comment/134281/

Discussion: Typical Carcinoid Tumor in Lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 10, 2019

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