Hi @helloitsme, your reaction to finding out you have NETs is normal. Even though NETs is rare, it's typically better to have NETs than the more common types of cancer. NETs is often a more of a chronic and treatable cancer. I take octreotide for my lung NETs/DIPNECH and it's very similar to lanreotide. I get one injection in the upper glute every four weeks. No big deal. I started taking two other meds for breast cancer two months earlier so it's hard for me to assign side effects to each med, but I can tell you that I've stayed on all three meds for over two years now. Well worth it. My side effects that I believe were added or got worse when I added octreotide were fatigue, some hair thinning (but not baldness), elevated blood sugar (treatable), lowered blood pressure and heart rate (treatable). Even with all three meds, I still have good quality of life and am not complaining. Octreotide greatly improved my respiratory issues.

I suggest the website http://www.LACNETS.org for lots of info on NETS including presentation videos from lots of NETS specialists. When you attend their live presentations through youtube you can also ask questions. It's not a treatment facility, but a large NETS support organization. Best of luck to you.

https://www.youtube.com/watch?v=Fe6C7oAsQBs
Here is a good overview of NETS