Neuroendocrine Tumors (NETs) Support Group

Public Support Group

Follow for updates

Search discussions

Start a new discussion

715 total results

Comments (653)

Hi Sandi You are a blessed person 19 year. Wow!!!! I was on lanreotide and had...

https://connect.mayoclinic.org/comment/746905/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 8, 2022

We sound very similar. Small bowel primary, mesenteric mass with resection in 2022. I have a...

https://connect.mayoclinic.org/comment/1218822/

Discussion: I am one year out with my diagnosis just finished 4th round of PRRT

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 22, 2025

I have been receiving the Octreotide injections (Sandostatin, and now lanreotide) for 11 years, every 28...

https://connect.mayoclinic.org/comment/1197117/

Discussion: Any one with Neuroendocrine tumors getting the shot once a month?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 25, 2024

Hello @cgamaha, I see that @colleenyoung and @dbamos1945 have already responded to your first post. I...

https://connect.mayoclinic.org/comment/1455969/

Discussion: Anyone else get bloating and abdominal pain from NETS or Lanreotide?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 8, 2025

Jan, sorry to hear about all of your health challenges. Sometimes DIPNECH is misdiagnosed as asthma...

https://connect.mayoclinic.org/comment/1222295/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 26, 2025

My husband is also a patient at Mayo Phoenix. Have they discussed captem with you? Everolimus...

https://connect.mayoclinic.org/comment/1122814/

Discussion: Everolimus for multiple Neuroendocrine tumors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 13, 2024

Greetings! Thanks for the post. I am happy to connect with you. I have been dealing...

https://connect.mayoclinic.org/comment/799602/

Discussion: Pancreatic NETs: Looking to connect with anyone with insulinoma

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 21, 2023

I have been heavily engaged in NETs since my wife was diagnosed at Mayo Rochester in...

https://connect.mayoclinic.org/comment/275681/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 9, 2019

Hello @markmark007 This is a good question. Has your wife talked with her oncologist about the...

https://connect.mayoclinic.org/comment/966631/

Discussion: Octreotide Injections - Skipping One or More?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 17, 2023

I was diagnosed with Metastatic P-NET VIPoma in 2019. I had surgery to remove a part...

https://connect.mayoclinic.org/comment/791950/

Discussion: NET-VIPoma pancreatic tumors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 3, 2023

@hopeful33250 My pulmonologist was the one who let me know NETs specialists existed. He recommended one...

https://connect.mayoclinic.org/comment/1416257/

Discussion: I have a neuroendocrine tumour in the small bowel and liver lesions

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 15, 2025

So have you considered octreotide injections for the DIPNECH? My allergy issues are respiratory. I was...

https://connect.mayoclinic.org/comment/1205603/

Discussion: Typical Carcinoid Tumor in Lungs

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 6, 2025

This is my opinion with the facts for myself. I started octreotide twelve and a half...

https://connect.mayoclinic.org/comment/1162233/

Discussion: NET on liver: Question about treatments when no symptoms

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 24, 2024

Hi, another DIPNECH ‘club’ member here. My diagnosis was late 2023 and I had an ablation...

https://connect.mayoclinic.org/comment/1392689/

Discussion: Biopsy showed DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 13, 2025

I'm in the same boat. Well differentiated, had small bowel resection, still have a mass and...

https://connect.mayoclinic.org/comment/1236191/

Discussion: I recently had surgery to remove NET in small intestine

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 13, 2025

Having a high count on Chromogranin is indicative of a Neuroendocrine tumor, regardless of whether or...

https://connect.mayoclinic.org/comment/1232800/

Discussion: Cromogranina A

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 9, 2025

I am so sorry to hear what your husband is going through Mine is similar no...

https://connect.mayoclinic.org/comment/1386167/

Discussion: Stage 4 Carcinoid tumor: What treatments have you had?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 3, 2025

Hello @wordnoid I get the octreotide shots every 28 days I am a NED but I...

https://connect.mayoclinic.org/comment/134518/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 20, 2017

I was diagnosed with Neuroendocrine tumors in my liver and small intestines back in December 2022....

https://connect.mayoclinic.org/comment/870969/

Discussion: Neuroendocrine tumor and carcinoid tumor

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 2, 2023

I was told when we destroyed my largest carcinoid tumor 2.6 cm with microwave ablation that...

https://connect.mayoclinic.org/comment/1108812/

Discussion: DIPNECH (diffuse idiopathic pulmonary neuroendocrine cell hyperplasia)

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 20, 2024

Visiting Mayo Clinic

Follow

6810

1 minute ago

Digestive Health

Follow

18380

13 minutes ago

Follow

8221

22 minutes ago

Melanoma & Skin Cancer

Follow

1083

38 minutes ago

Pancreatic Cancer

Follow

3579

2 hours ago