M. D. Anderson Cancer Center
Date: December 2008
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Hereditary cancers result from inherited gene mutations. These cancers tend to differ from other cancers. Family members tend to be diagnosed with cancer at an earlier age and multiple family members have the same or similar cancers. Cancer also is more likely to develop in more than one site in the body, and rare cancers may occur, such as male breast cancer.
To determine your risk for hereditary cancer, you must know your family medical history. A family with a history of hereditary cancer has a tell-tale family medical history, or pedigree. Such a pedigree clearly shows that hereditary cancer has a broader impact across generations for the same or similar cancers. Evaluating your family medical history is an important step. Researching and writing down your family medical history is a good way to start a pedigree. For tips to get started, download “Gathering Information for a Cancer-Focused Family History” from our web site.
A genetic counselor can discuss your family history and determine if genetic testing is right for you. Genetic counselors are health professionals who have expertise in medical genetics and counseling. The goals of genetic counseling are to evaluate your family history and risk factors regarding cancer, discuss genetic testing options and review appropriate screening and prevention recommendations.
Genetic tests are available for several hereditary cancer genes. They involve looking for gene mutations in a sample of blood or tissue. In many cases, genetic testing is recommended only for individuals who have a strong family history of cancer and testing should be performed first on a family member with cancer. Prior to testing, you’ll be asked to provide a complete history of all cancers in your family to evaluate your risk of having a hereditary form of cancer.
There are many advantages and disadvantages that you should consider before undergoing genetic testing. There are significant implications for yourself and other family members.
If your test results are positive for a certain gene mutation and you are at increased risk for developing a certain type of cancer, you may experience an increased sense of anxiety knowing that you have a gene mutation. To help alleviate your anxiety, your health care provider can help you decide how to deal with your results. Possibilities include increased surveillance for cancer symptoms, early or more frequent cancer screening exams, more strict adherence to a healthy lifestyle, medicines that may reduce your risks of cancer and even preventive surgeries to remove as much of the at-risk tissue as possible.
Additionally, knowing the results may provide a sense of emotional relief and control. You may feel that you can make more informed decisions about your future including marriage, child bearing and your own personal health care needs.
If your genetic test results are negative for certain gene mutations, you probably won’t feel as much anxiety, but you may feel other mixed emotions that can create tension among family members. Some people experience a type of “survivor’s guilt,” meaning that you feel guilty because you don’t have the mutation when someone else in your family does.
Finding out that you have a gene mutation does not mean you will definitely get cancer, nor does finding out that you don’t have a gene mutation guarantee that you won’t get cancer, so, you must carefully weigh the pros and cons to decide whether genetic testing is right for you.
The cost for genetic testing can range from several hundred to several thousand dollars. Insurance policies vary with regard to whether the cost of genetic testing is covered.
Some people are worried that they may be discriminated against based upon the results of genetic testing. Sometimes people are concerned that having this information may affect their health insurance coverage or premiums, or even affect their employment. The Genetic Information Non-discrimination Act, also called GINA, signed into law in May 2008, prohibits group and individual health plans and employers from using genetic information to determine insurance eligibility or premiums. GINA governance of insurance will go into effect in May 2009 and governance of employers will go into effect in November 2009. It is important to weigh the potential benefit of a genetic test against the fear of discrimination. Likewise, it is important to base the decision whether or not to have genetic testing on credible and up-to-date information received from a genetic counselor.
The Clinical Cancer Genetics Program at M. D. Anderson Cancer Center provides hereditary cancer risk assessment and consultation services. To learn more about this program visit their web site. For general information about genetic testing, visit the National Society of Genetic Counselors website.
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© 2008 The University of Texas M. D. Anderson Cancer
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