Neuroendocrine Tumors (NETs) Support Group

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Comments (653)

DIPNECH and lung NETs typically do have somatostatin receptors which is why I had the DOTATATE...

https://connect.mayoclinic.org/comment/1361481/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 1, 2025

Getting ready for my first PRRT treatment in August for stage IV primary gastric tumor with...

https://connect.mayoclinic.org/comment/1358080/

Discussion: Questions Regarding Results after PRRT Treatment

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jul 28, 2025

We had a consultation with a NET oncologist He recommended taking Octreotide as he had patients...

https://connect.mayoclinic.org/comment/1060045/

Discussion: Questions Regarding Results after PRRT Treatment

Support Group: Neuroendocrine Tumors (NETs)

Posted: May 1, 2024

@jsudjian I don't see any mention of you having NETs so it doesn't seem like it...

https://connect.mayoclinic.org/comment/1378264/

Discussion: Worried about carcinoid syndrome

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 24, 2025

Hi @sderose, thanks for the like and hug. It wasn’t that I was trying to avoid...

https://connect.mayoclinic.org/comment/817332/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Feb 25, 2023

Hi @helloitsme, your reaction to finding out you have NETs is normal. Even though NETs is...

https://connect.mayoclinic.org/comment/851198/

Discussion: Just diagnosed: Metastatic NETs. Treatment?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 29, 2023

I get Sandostatin LAR injection every 4 weeks and neuroendocrine specialist advices against Pet GA 68...

https://connect.mayoclinic.org/comment/794761/

Discussion: PET Ga-68 Scan Scheduling vs. Most Recent Lanreotide Injection

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jan 10, 2023

@kevinmonroemi So glad you posted to the site I live in New York and I am...

https://connect.mayoclinic.org/comment/1454934/

Discussion: Cost of treatment

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 7, 2025

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

https://connect.mayoclinic.org/comment/1272924/

Discussion: Anyone have a neuroendocrine tumor in small intestine?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 2, 2025

I'm glad that you found Dr. Liu's podcast helpful,@mikhailtsapenko. So, if I understand correctly, your oncologist...

https://connect.mayoclinic.org/comment/1194093/

Discussion: Still have symptoms after surgery

Support Group: Neuroendocrine Tumors (NETs)

Posted: Dec 20, 2024

Just had my follow up MRI after 6 months, my serotonin levels were at 60, after...

https://connect.mayoclinic.org/comment/885750/

Discussion: Differentiating Carcinoid syndrome from MCAS?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 26, 2023

My brother's medical oncologist did not put him on Octreotide (that is what his office uses)...

https://connect.mayoclinic.org/comment/877307/

Discussion: Is it common to start on Lanreotide with no known tumors?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 12, 2023

I am currently having SBRT to radiate 2 carcinoid lung tumors that are 1.5 cm. They...

https://connect.mayoclinic.org/comment/838553/

Discussion: New DIPNECH diagnosis, need advice on doctors

Support Group: Neuroendocrine Tumors (NETs)

Posted: Apr 6, 2023

I tried the protein shakes when I was recovering from my resection surgery. They contain a...

https://connect.mayoclinic.org/comment/919104/

Discussion: First Lanreotide Injection: Any tips about diet and side effects?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Aug 26, 2023

@sophiarose I’ve been taking octreotide injections for lung NETs and DIPNECH for 3.5 years and it...

https://connect.mayoclinic.org/comment/1181820/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 29, 2024

You bring some interesting questions. The answers to those questions are not easy. We all seem...

https://connect.mayoclinic.org/comment/1169691/

Discussion: Experience w/ watch and wait approach for metastatic liver tumor

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 7, 2024

Hello @wordnoid. Welcome, I'm glad to see that you have joined Mayo Connect. Thanks for your...

https://connect.mayoclinic.org/comment/127207/

Discussion: Treatments for Carcinoids

Support Group: Neuroendocrine Tumors (NETs)

Posted: Nov 9, 2016

I have only had the every 28 day injections I did lanreotide for 3 months (3...

https://connect.mayoclinic.org/comment/820017/

Discussion: Lanreotide Manufacturers: anyone have experience with either?

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 2, 2023

I take the octreotide shot every 28 days. It has made such a difference in my...

https://connect.mayoclinic.org/comment/1329029/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Jun 17, 2025

Sherry, your experience sounds exactly like mine. I have been getting injections of octreotide every 4...

https://connect.mayoclinic.org/comment/1268153/

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

Support Group: Neuroendocrine Tumors (NETs)

Posted: Mar 27, 2025

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