Living with GEP-NETs

GEP-NETs can affect people in many different ways, and how you feel may change over time.

There are many areas in the body where GEP-NETs can occur, and some NETs cause symptoms while others don’t. This means that your treatment plan will be unique to you, as every case is different and there is no one set way to treat GEP-NETs.1,2 Working with your doctors to make sure you have the best treatment and symptom control possible is an important part of managing your GEP-NETs.

Whether you have just been diagnosed, or have been receiving treatment for some time, the information here may help you continue to live the life you want.

Although GEP-NETs are rare, it doesn’t mean you are alone. In 100,000 people, about 3 to 5 people will have GEP-NETs. 3 That means that there are probably over 200,000 people around the world with GEP-NETs.*

Many people find it helps to learn as much as possible about their condition, hear about the experiences of other sufferers, and to share stories. There are a few patient support groups available where you can find information on GEP-NETs, details of treatments and maybe reach out to others.

The International Neuroendocrine Cancer Alliance is a resource for anyone living with NETs. The INCA website has links to support groups all over the world.

*Based on incidence of 3 per 100,000 and a global population of 7.8bn


  1. Singh S et al. Patient-Reported Burden of a Neuroendocrine Tumor (NET) Diagnosis: Results From the First Global Survey of Patients With NETs. J Glob Oncol. 2017;3(1):43-53.
  2. Basuroy R et al. Delays and routes to diagnosis of neuroendocrine tumours. BMC Cancer. 2018; 18: 1122.
  3. Sahani DV et al. Gastroenteropancreatic neuroendocrine tumors: role of imaging in diagnosis and management. Radiology 2013;266(1).