The majority of cancer is sporadic and caused by genetic changes during your lifetime. However, approximately 5-10 percent of cancers are inherited. When changes (or mutations) in specific genes are passed from one blood relative to another, the risk for developing cancer greatly increases, and usually at an earlier age. This is known as Hereditary Cancer Syndrome.
Genetic testing can help determine whether or not you carry a mutation.
Am I at risk?
Below is a non-exhaustive list of common characteristics associated with Hereditary Cancer Syndrome and things to look for in your personal and family history:
- Family members with multiple primary cancers (i.e., two or more new cancers, not one that has spread)
- Two or more relatives with the same type of cancer(e.g. breast cancer, or colorectal cancer etc…) on the same side of the family
- Certain cancer genetic syndromes are more common among certain ethnic groups. For example, hereditary breast and ovarian cancer is more common in people of Ashkenazi Jewish ancestry.
- Early onset of cancer (less than 50 years old)
- Rare cancer like male breast cancer or ovarian cancer
- A known familial mutation
- Pathological findings for certain types of cancers warrant further genetic evaluation( e.g. triple negative: ER/PR/Her-2 negative breast cancer before age 60, medullary thyroid cancer)
Why would I want genetic testing?
These tests may confirm a specific gene change (mutation) as the likely cause of a diagnosed cancer, identify potential risks for other cancers or conditions, check if family members have an increased risk for developing cancer, and possibly modify medical management. Having a gene mutation doesn’t necessarily mean you will ever have cancer but it will increase your risk. This information is important to risk management decisions related to future risk for cancer. Cancer screening is very important. If there is an increased risk for cancer, it may be necessary to begin cancer screening at an earlier age and repeat it more frequently. Also, chemoprevention and risk-reducing surgeries are other options that will be discussed if you carry a cancer gene mutation.
The testing process:
Genetic testing is available for several genes associated with cancer. Before and after a genetic blood test, you will meet with a genetics provider from RPCI Clinical Genetic Service to help you understand the purpose of genetic testing and determine the type of test required. They will also review your test results and provide the necessary steps needed for medical management. If you have a genetically higher risk to develop certain cancers you are recommended to follow high-risk cancer surveillance. If you are a good candidate for genetic testing, it typically takes two visits — one for consultation and testing and then a follow-up about three weeks later to go over the results. The majority of our lab testing is done off-site.
Can anyone have genetic testing?
Genetic testing is a relatively new development and is not recommended for everyone. Generally, its use is limited to families with certain types of cancers who meet specific criteria, are diagnosed, or are susceptible to inherited cancer syndrome. Genetic testing for cancer is very complicated and raises many questions. Many factors need to be considered by the doctor, the genetic specialist, and the person interested in testing. Therefore, genetic consultation and risk assessment is recommended before considering genetic testing.
What does it cost and is it covered by health insurance?
The cost of genetic counseling depends upon the extent and complexity of the consult. Initial and comprehensive genetic consults range from about $250-$450, whereas follow-up or limited consults are less. Most insurance plans cover this cost; however, it is your responsibility to contact member services at your insurance company to find out what is covered.
The cost for genetic testing varies depending on the gene tested and the method of analysis. Genetic consultation and/or testing may or may not be covered by insurance. This is generally approached on an individual case-by-case basis and a member of the Clinical Genetics Service will assist you in the insurance authorization process prior to genetic testing.
Privacy and discrimination:
If you do require genetic testing or discover that you carry a gene mutation, there is a combination of state and federal laws in place that protects most of NYS residents from health care insurance or employment discrimination. All results are kept confidential and reviewed with you by a member of the Clinical Genetics Services.
If you or your loved ones have one or more characteristic listed above or you’re concerned about being at risk for Hereditary Cancer Syndrome, you can make an appointment to meet with a genetics provider by calling 716-845-8400 or 1-877-ASK-RPCI.