This is an important issue to us. I lost four out of four grandparents to cancer and my father passed away from cancer related causes four years ago.
Knowledge of hereditary cancer genetics is rapidly advancing as new information is being discovered at an accelerated pace. Consulting with an expert in cancer genetics is the best way to ensure receiving the most up-to-date and credible information when trying to determine risk for cancer and make decisions about risk management. Cancer genetic counselors, geneticists, and risk assessment counselors are health care providers who are specialists in hereditary diseases. They can help individuals more clearly understand their risk for hereditary cancer by:
- Reviewing the family history of cancer including information about family members who never developed cancer
- Assessing and explaining risk for hereditary cancers and/or the chance to detect a mutation through genetic testing
- Describing the benefits and limitations of genetic testing
- Describing available medical management options based on test results
- Discussing whether a person may benefit from genetic testing
- Determining which family member is the most appropriate to begin the genetic testing process in a family
- Interpreting genetic test results and explaining what they mean for you and your family in the context of your personal and family history
- Providing referrals to experts for follow-up screening and risk management
- Providing referrals to support resources and research opportunities (including research on genetic testing, screening, treatment, etc.)
- Discussing your risks and medical management options with your regular health care provider(s)
Genetic counselors help individuals and families make informed decisions about genetic testing. These specially-trained counselors provide education regarding genetics and heredity in a way that people can comprehend and use to make the best decisions for themselves. Counselors do not try to persuade people to have or avoid genetic testing; they discuss appropriate cancer screening, risk management, and follow-up care based on the most recent medical literature and individual risk. Thus, a genetic counseling appointment can even benefit individuals who decide not to pursue genetic testing. Because genetic counselors are also familiar with state and federal laws regarding information and discrimination, they can address common concerns about the privacy and confidentiality of personal genetic information.
A genetic counseling session usually involves an in-depth discussion about the family medical history. The genetic counselor will want to know family medical history going back three generations, including:
- Who in the family has been diagnosed with cancer and who has not
- The primary site of the cancers (for example, began in the breast and spread to the brain), this may require a copy of original pathology reports if available
- The age of diagnosis for any cancers in the family
- The current ages of living family members and the ages at death of those who are deceased
- Any other family health information you feel may be important or unusual
Finding a Genetic Specialist
Geneticists are physicians who have specialized in hereditary diseases. Certified genetic counselors are health care professionals who have had specialized training and have earned a Masters degree in genetic counseling. The National Society of Genetic Counselor website offers a searchable directory for finding a certified genetic counselor by state and specialty. (To find a genetic counselor who specializes in cancer genetics, choose "cancer" under the options "Area of Practice/Specialization"). Some healthcare facilities do not have genetic counselors on staff and for some people traveling to another facility is not possible. There is a company that provides genetic counseling consultations by telephone with board-certified genetic counselors.
Other health care providers such as nurses or oncologists may offer genetic counseling and testing. The amount of training these health care providers have received in the area of cancer genetics may vary; consequently their ability to provide comprehensive genetic counseling and interpretation of test results may also vary. It is important to know the qualifications of the person providing your genetic counseling. The National Cancer Institute provides a list of health care providers offering genetic counseling and testing. This tool also provides information on the certification of the health care providers listed
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