Neuroendocrine Tumors (NETs) Support Group

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Comments (653)

Because of the possibility of carcinoid crisis due to epinephrine, I decided to wear a medical...

https://connect.mayoclinic.org/comment/137534/

Discussion: My Husband was newly diagnosed with Carcinoid Cancer

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 14, 2017

Yes! Sorry you're so sick! Are you even sure it's from the NETs and not a...

https://connect.mayoclinic.org/comment/888985/

Discussion: Should I go to the ER? I’m sicker than I’ve ever been.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 2, 2023

Missterri, I had those symptoms as well, the lobectomy really helped and the chemo and proton...

https://connect.mayoclinic.org/comment/1488022/

Discussion: What does the future look like for a stage 4 NET patient?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 21 11:11am

I have Lungs NETS in both lungs. Recent growth, small amount now diagnosed with DIPNECH. I...

https://connect.mayoclinic.org/comment/1205143/

Discussion: Concerns after lobectomy for carcinoid tumor in lung

Support Group: Lung Cancer

Posted: Jan 6, 2025

Thanks for your update, @megansims. I am glad to hear that your symptoms have improved with...

https://connect.mayoclinic.org/comment/271269/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 21, 2019

Hello, amk1122. I have just finished my 3rd round of PRRT. I've also lost weight (20lbs)....

https://connect.mayoclinic.org/comment/951690/

Discussion: PRRT for NETs: Questioning whether I should continue or not

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 22, 2023

Hello @avawein I appreciate knowing the date of your surgery. I will be thinking (and praying)...

https://connect.mayoclinic.org/comment/636588/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 18, 2021

Hello @trixie1313, I know that we have posted before and yes NETs in the breast are...

https://connect.mayoclinic.org/comment/297054/

Discussion: Anyone have neuroendocrine tumor (NETs) of the breast?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 26, 2020

Hi Jane @gram26 I would agree with Theresa to check out all the DIPNECH comments on...

https://connect.mayoclinic.org/comment/882190/

Discussion: Should I see a NET specialist?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 21, 2023

Hi @triveraderubio and others with DIPNECH and Lung NETs. I hope the octreotide is working for...

https://connect.mayoclinic.org/comment/834726/

Discussion: Carcinoid Tumorlets Neuroendocrine tumor/Cell Hyperplasia - DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 30, 2023

I had a modified Whipple in 2015 for insulinomas x 2. 3 months later had more...

https://connect.mayoclinic.org/comment/1267600/

Discussion: Pancreatic Cancer: Anyone have liver metastasis after Whipple?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 26, 2025

I was diagnosed in 2023, this was all found on accident as I was involved in...

https://connect.mayoclinic.org/comment/1102518/

Discussion: Anyone have side effects after Lanreotide injection?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 9, 2024

Has anyone been advised to use a celiac plexus nerve block for back and upper abdominal...

https://connect.mayoclinic.org/comment/1019957/

Discussion: Anyone had plexus nerve block for cancer pain?

Support Group: Pancreatic Cancer

Posted: Feb 21, 2024

@nannybb My breast cancer is your most common hormone driven kind. Even though stage 1, I...

https://connect.mayoclinic.org/comment/1432536/

Discussion: Benign carcinoid tumor in bronchi tube

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 6, 2025

My origin was small bowel & 4 lymph nodes resected in 2022. In 2024 it reoccurred...

https://connect.mayoclinic.org/comment/1384654/

Discussion: Experience w liver metastasis & new small tumor peritoneal cavity

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 1, 2025

The dentist called my oncologist and he said absolutely no epinephrine so I need to have...

https://connect.mayoclinic.org/comment/1322979/

Discussion: Root canal without Epinephrine

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 8, 2025

Sophiarose, the radiologist and doctors want most of the Octreotide or Lanriotide out of your system...

https://connect.mayoclinic.org/comment/1169494/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 7, 2024

davisnrn: I read your post I am going to be 70 and I am in my...

https://connect.mayoclinic.org/comment/1017749/

Discussion: Statistics on progression free survival while on SSA / Lanreotide

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 18, 2024

I'm a NETs patient on monthly Lanreotide. I just had a tooth pulled using Lidocaine at...

https://connect.mayoclinic.org/comment/1322071/

Discussion: Root canal without Epinephrine

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 7, 2025

Hi @grec I shared my details earlier in the thread if you want to scroll back....

https://connect.mayoclinic.org/comment/1048486/

Discussion: Neuroendocrine cells in Breast and Lungs DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 10, 2024