Neuroendocrine Tumors (NETs) Support Group

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Comments (653)

Do you have a NETS oncology surgeon specialist & a regular oncologist? Also curious why you...

https://connect.mayoclinic.org/comment/1312510/

Discussion: Small Bowel Neuroendocrine Cancer, Metastasis to Mesentery Recurrence?

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 25, 2025

My husband has a neuroendocrine tumor in the small intestine found by accident as they were...

https://connect.mayoclinic.org/comment/1272927/

Discussion: Anyone have a neuroendocrine tumor in small intestine?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 2, 2025

The lanreotide and octreotide injections can be a little painful during the injection but side effectss...

https://connect.mayoclinic.org/comment/1439051/

Discussion: What is the best treatment for carcinoid tumor in mesentery?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 15, 2025

I went to 2 local oncologists, 1 at Penn Medicine and 1 at Dana Farber. The...

https://connect.mayoclinic.org/comment/1216861/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 19, 2025

I have breast cancer as well as lung NETs and DIPNECH. My breast cancer is unrelated;...

https://connect.mayoclinic.org/comment/1206124/

Discussion: Concerns after lobectomy for carcinoid tumor in lung

Support Group: Lung Cancer

Posted: Jan 7, 2025

@ineedawhale Yes. I had the DOTATATE Cu64 scan. As it turned out it wasn’t more valuable...

https://connect.mayoclinic.org/comment/1358919/

Discussion: Recently diagnosed with a NET in my middle lobe of my right lung.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 28, 2025

Nice to see another group! I started on long-acting Octreotide at the end of November and...

https://connect.mayoclinic.org/comment/134515/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 20, 2017

I have similar calcified mesenteric masses. I chose not to do "exploratory" surgery but am taking...

https://connect.mayoclinic.org/comment/1433055/

Discussion: What is the best treatment for carcinoid tumor in mesentery?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 7, 2025

I have been told by multiple oncologists that along with managing symptoms it also inhibits the...

https://connect.mayoclinic.org/comment/1345975/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 11, 2025

My husband started Roth Octreotide & has now switched to Lanreotide, both shots makes him itch...

https://connect.mayoclinic.org/comment/1334316/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 24, 2025

So far I do not have any side effects to SBRT. Am getting 5 treatments and...

https://connect.mayoclinic.org/comment/838786/

Discussion: New DIPNECH diagnosis, need advice on doctors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 6, 2023

Everyones situation is different, I started with Lanreotide, for the first 3 months, then switched to...

https://connect.mayoclinic.org/comment/1364750/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 6, 2025

I totally get the "Get it outta me" mentality. As others have said, due diligence is...

https://connect.mayoclinic.org/comment/1386533/

Discussion: I saw the surgeon. More confused than ever.

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 4, 2025

@calimomma Hard to answer your question because you have a lot going on and I’m not...

https://connect.mayoclinic.org/comment/1232671/

Discussion: Relationship between endometrium cancer and DIPNECH

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 9, 2025

@kevinmonroemi thank you for sharing. I have functional Gastrinoma PNET at head of pancreas removed in...

https://connect.mayoclinic.org/comment/1542508/

Discussion: Started PRRT treatment: Anyone experience tumor markers increasing?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 4 8:51am

Hi @nana120 That's such great news to be stable!!! Sounds like the lanreotide is doing its...

https://connect.mayoclinic.org/comment/937205/

Discussion: Updating about My Lanreotide Injections & CT Scan

Support Group: Neuroendocrine Tumors (NETs)

Posted: Sep 27, 2023

The protocol used by most oncologists is based on the National Comprehensive Cancer Network's recommendations, and...

https://connect.mayoclinic.org/comment/802916/

Discussion: What's your NETs treatment and surveillance protocol?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 28, 2023

Within days of my first shot of sandostatin I developed rheumatoid arthritis severe. But what was...

https://connect.mayoclinic.org/comment/1530404/

Discussion: Interested in hearing people's experiences with PRRT

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 19 7:01am

Hello stevesrenberg31, I have been taking octreotide for 8mo. It feels like it works intermittently as...

https://connect.mayoclinic.org/comment/1023345/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 26, 2024

Good morning. I see Dr. Jason Starr at Mayo Jacksonville, Fl. In the last two years,...

https://connect.mayoclinic.org/comment/271257/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Oct 28, 2019

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