Neuroendocrine Tumors (NETs) Support Group

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Comments (657)

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

Sorry to hear of all your challenges. It's difficult when they are coming from all directions....

https://connect.mayoclinic.org/comment/1228165/

Discussion: Already on oxygen - diagnosed with DIPNECH: What happens next?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 2, 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

@ekri I'm so sorry to hear about your sister. Cancer and cancer treatment are so challenging....

https://connect.mayoclinic.org/comment/1025598/

Discussion: Atypical pulmonary carcinoid

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 1, 2024

Do get a second opinion but be sure they are a NET specialist. My husband was...

https://connect.mayoclinic.org/comment/996445/

Discussion: PNET on tail of pancreas with numerous bilobar hepatic metastases

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 13, 2024

I had some small lung nodules noticed on a scan 2 years ago and was being...

https://connect.mayoclinic.org/comment/831653/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 25, 2023

Have non-operable S4 primary tumor in Mesentery, too close to liver blood supply. Had total hysterectomy...

https://connect.mayoclinic.org/comment/1443174/

Discussion: S4, G2 NETS in mesentery. Declined Exploratory Surgery

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 20, 2025

I had an outpatient peek & see exploratory so NET surgeon could see what he was...

https://connect.mayoclinic.org/comment/1433287/

Discussion: S4, G2 NETS in mesentery. Declined Exploratory Surgery

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 7, 2025

You just need one NETs team as the two conditions are related. You’ll treat them at...

https://connect.mayoclinic.org/comment/1410880/

Discussion: DO I need 2 teams if I have both Nets-lung and DIPNECH?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 7, 2025

I had Octreotide in the hospital for almost two weeks. And it sounds like I maybe...

https://connect.mayoclinic.org/comment/1340935/

Discussion: 1/2 Pancreas, 1 lymph node involved. What treatment would be likely?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 4, 2025

Hopeful. I was diagnosed with Islet Cell Cancer, a neuroendricine adenoma carcinoma back in July of...

https://connect.mayoclinic.org/comment/90122/

Discussion: I have recently been diagnosed with my third neuroendocrine tumor

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 31, 2016

Yes, absolutely seek out a multidisciplinary NETS team. I see one at UCLA and they work...

https://connect.mayoclinic.org/comment/861475/

Discussion: Should I see a NET specialist?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 17, 2023

Hello @sophiarose Personally, I have never taken either octreotide or lanreotide so I do not know...

https://connect.mayoclinic.org/comment/727713/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 17, 2022

I have been on Octreotide shots for several years and also took Afinitor for a couple...

https://connect.mayoclinic.org/comment/710265/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 21, 2022

Hi @mimi206 I have DIPNECH and lung NETs (typical carcinoids) with 50+ nodules so we are...

https://connect.mayoclinic.org/comment/1250591/

Discussion: DIPNECH diagnosis. Has anyone had radiation?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 4, 2025

Welcome to the group. I have had success controlling my blood sugar with Octreotide (Sandostatin LAR...

https://connect.mayoclinic.org/comment/1180040/

Discussion: Neuroendocrine insulinoma and MDS

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 26, 2024

Hi,Sorry to hear about your diagnosis. One thing doctors and research haveshown is that most neuroendicrine...

https://connect.mayoclinic.org/comment/90131/

Discussion: I have recently been diagnosed with my third neuroendocrine tumor

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 10, 2016

@gig666 How did your PET scan turn out? Was it a DOTATATE scan specifically for NETs?...

https://connect.mayoclinic.org/comment/1033637/

Discussion: High risk surgery. Is it worth it?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 14, 2024

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