We don’t know what causes many NETs. Most seem to develop sporadically. Even though the causes of NETs are not largely known, we do know that some risk factors for neuroendocrine cancers can be passed down in families.
Researchers estimate that inherited factors may be associated with 10% of PNETs and 35% of pheochromocytomas and paragangliomas. Other rates vary depending on the primary site and subtypes of tumors.
Your medical history and your family’s medical history are part of the evaluation process. Having a first-degree relative with a known mutation also plays a vital role in establishing a clinical diagnosis. In some cases, the presence of two or more associated medical conditions or syndromes may indicate an inherited genetic condition.
Being aware that you have an inherited genetic risk factor will not always have an impact on your treatment plan but it may affect how your doctor monitors your health. If a genetic mutation is confirmed, your doctor may order additional testing regularly to look for other problems associated with that risk factor.
There are many different types of gene tests, which use a range of technologies. The gene testing kits advertised on TV (also known as direct-to-consumer testing) will probably not identify risk factors for NETs. Your doctor can order a test to look for specific mutations.
Your doctor may order genetic testing if your medical or family history indicates that you may have an inherited risk factor. Doctors can test for inherited mutations using blood or saliva.
Genetic testing looks for specific genes as well as certain changes in those genes. It is essential that your care team guides any decisions about genetic testing so the test results are reliable, accurate, and meaningful.
Genetic testing may not always be appropriate, especially if the results will not affect treatment planning. Genetic counseling can help you consider the risks, benefits, and limitations of genetic testing.
Genetic counseling includes a detailed review of an individual’s personal and family medical history that is relevant to the possible cancer of risk. Counseling also includes discussions about issues like:
Genetic tests may not be covered by all the insurance plans or may be covered only based on strict criteria. Contact your health insurance plan to learn more about your coverage and inquire about the costs before making any decisions about genetic testing.
Ask your doctor if there’s a genetic counselor who works with their team or look for a genetic counselor here.
[How do we mention supported research projects in a way that is patient friendly? General comment with a link to the research page for more info if people want to do a deeper dive?]