Frequently Asked Questions
A few basic questions are answered below. If you need more information, talk with your doctor.
Questions About HBOC:
Questions About Having Hereditary Breast and Ovarian Cancer (HBOC) Syndrome:
Questions About Considering Testing for HBOC:
Questions About Confidentiality and Your Rights:
Questions About HBOC
Q
A
If you have hereditary breast and ovarian cancer (HBOC) syndrome, you carry a gene mutation you inherited from your father, your mother, or sometimes both parents, that dramatically increases your risk for certain cancers. People with HBOC have up to a 50% risk of breast cancer by age 50 and up to a 44% risk of ovarian cancer by age 70. People who do have an increased risk can take measures that may prevent cancer from occurring, or that may enable them to detect it early.
Q
A
The more you know about your family history of cancer, the more valuable your discussion with your doctor will be. Ask your relatives for help. If you aren't sure exactly how you're related to a particular family member, or whether they had breast or ovarian cancer, discuss it with other family members. Bring a notebook to family gatherings, or make phone calls—and go back three generations. Gather all of the information you can about your first-degree (siblings, children, parents), second-degree (half-siblings, uncles and aunts, grandparents, grandchildren), and third-degree relatives (cousins, great-grandparents, great-aunts and great-uncles) who have had breast or ovarian cancer, or any of the other cancers associated with HBOC, such as pancreatic, prostate, and colon cancers.
Q
A
Ask your older relatives, and check family records if possible. They may not know the kind of "female" or gynecological cancer your relative had, but they may remember details about the treatment or outcome that could help your doctor determine whether or not it could have been ovarian cancer. If your relative had a cancer other than breast cancer or ovarian cancer, it may help rule out HBOC—but still be a factor in your risk assessment.
Q
A
Yes. Hereditary Breast and Ovarian Cancer (HBOC) syndrome can be inherited from either the father's side or the mother's side of the family.
Questions About Having Hereditary Breast and Ovarian Cancer (HBOC) Syndrome
Q
A
A positive test result tells you that you have an increased risk of breast and ovarian cancer, as shown below:
The BRCA Mutation Increases
Your Risk of Cancer
If your test result is positive, you can take action to reduce your chances of developing cancer. Work with your doctor to create a plan for medical management going forward, and help your family members by sharing your test result with them.
Q
A
If your test result is positive, you have a number of options to discuss with your doctor, including:
- Prescription drugs such as tamoxifen to reduce the risk of breast cancer
- Oral contraceptives to reduce the risk of ovarian cancer
- Increased surveillance (check-ups and tests) from an earlier age
- Preventive surgery
Remember, not all options may be right for you. Work with your doctors to put together a plan.
Q
A
According to the American Cancer Society's journal for clinicians:
“Testing minor children for hereditary cancer mutations is recommended only when prevention strategies are necessary at a young age.”
If your test result is positive, talk to your doctor about all of your direct, biological relatives who may be affected, including your children.
Q
A
Get your doctor's advice. Depending on your test result, family members may need information about HBOC.
The provider of the tests for HBOC, Myriad Genetic Laboratories, Inc., offers a sample letter that can be sent to family members. These letters are available as Word documents at BRACnow.com.
Q
A
Yes. People with a BRCA gene mutation are at a greater risk of developing a new cancer, either in the ovaries or the breast. Knowing your BRCA status can help you take steps to reduce this risk or, possibly, detect another potential cancer at an earlier, more treatable stage.
Q
A
A woman who carries a
BRCA1 or
BRCA2 mutation is at an increased risk for both breast and ovarian cancer, even if there are no known cases of ovarian cancer in her family. Fortunately, there are
effective options for reducing the risk of ovarian cancer.
Q
A
A number of federal and state laws prohibit insurance discrimination. The Health Insurance Portability and Accountability Act (
HIPAA) recognizes genetic information as Protected Health Information (PHI) and specifies protection for the confidentiality of PHI. HIPAA also provides restrictions on health-related information in making coverage decisions and in setting premiums by group health insurers. HIPAA further states that genetic information in the absence of a diagnosis cannot be considered a pre-existing condition. Many states have enacted additional protections against genetic discrimination in health insurance or employment or both. In May 2008, the Genetic Information Nondiscrimination Act (
GINA) was signed into law and will add to the legal protections that are in place on both the federal and state levels.
Questions About Considering Testing for HBOC
Q
A
While testing is the most accurate way to determine your inherited risk of cancer, only people who have breast or ovarian cancer in their personal or family history need to be tested. If breast or ovarian cancer runs in your family, let your doctor know. Together you can decide whether testing is right for you.
Q
A
While testing is the most accurate way to determine your inherited risk of cancer, only certain people who have breast or ovarian cancer in their personal or family history need to be tested. If breast or ovarian cancer runs in your family, let your doctor know.
Q
A
Most health insurance plans pay for the test. Your doctor can help you find out if your insurance will cover testing.
Q
A
Your doctor will let you know your test results as soon as they are available—as early as 2 weeks from the date your test is started.
Q
A
No. Testing does not tell you if you currently have cancer. Your test results tell you about your inherited risk of breast and ovarian cancer.
Q
A
Men should consider testing if they have a personal history of breast cancer, a family history of breast or ovarian cancer, or a family member with a BRCA1 or BRCA2 mutation. Although male breast cancer is rare, men who carry BRCA mutations are more likely to develop breast cancer and prostate cancer. Men with a BRCA mutation also have a 50 percent chance of passing it on to their children—whether or not they've been diagnosed with cancer.
Q
A
According to the National Cancer Institute, "test results may have an impact on a person's emotions, social relationships, finances, and medical choices." No one wants to hear that they have a dramatically increased risk of cancer. And, for those who have lost relatives to cancer, a negative result may seem like an unearned "free pass" that brings on feelings of guilt. If you are planning to test, keep in mind that you are gathering critical information that can be used not only by you, but by others in your family, to prevent cancer. Before you get your result you should be prepared for dealing with these and other issues your result may raise—and get the support you need to take the next steps.
Q
A
You could still have an increased risk for developing breast or ovarian cancer from other factors not covered by the test. While most HBOC—up to 90%—is caused by mutations in the BRCA1 and BRCA2 genes, other genetic predispositions to breast and ovarian cancer include Cowden syndrome, Li-Fraumeni syndrome, Peutz-Jeghers syndrome, and ataxia-telangiectasia. Still others may not yet have been identified by research.
Questions About Confidentiality and Your Rights
Q
A
A number of federal and state laws prohibit insurance discrimination. The Health Insurance Portability and Accountability Act (
HIPAA) recognizes genetic information as Protected Health Information (PHI) and specifies protection for the confidentiality of PHI. HIPAA also provides restrictions on health-related information in making coverage decisions and in setting premiums by group health insurers. HIPAA further states that genetic information in the absence of a diagnosis cannot be considered a pre-existing condition. In the federal government, executive departments and agencies are prohibited by executive order from using protected genetic information as a basis for employment decisions. The Equal Employment Opportunity Commission has interpreted the Americans with Disabilities act to provide some additional protections from the use of genetic information by employers. Many states have enacted additional protections against genetic discrimination in health insurance or employment or both. In May 2008, the Genetic Information Nondiscrimination Act (
GINA) was signed into law and will add to the legal protections that are in place on both the federal and state levels.
The National Human Genome Research Institute of the National Institutes of Health has more information on genetic discrimination, your privacy, and the law.
Q
A
Genetic test results are strictly confidential. The testing laboratory only releases test results to the doctor who ordered the test. Even when insurance plans pay for testing, the insurer does not receive the results. Under no circumstances will Myriad Genetic Laboratories, Inc., the provider of the test, give your results to anyone other than the ordering doctor without your written consent.
Q
A
Myriad Genetic Laboratories, Inc., the provider of the test, will assist you with health insurance billing and reimbursement issues.
Your healthcare provider documents certain key ancestry and personal history information and designates the appropriate test for you on the test request form. On the same form, you choose a payment option by checking the appropriate box. If an Insurance Billing option is selected by you, your signature is required and Myriad will verify benefits, submit claims for testing and file appeals if your claims are denied.
More About Hereditary Breast and Ovarian Cancer (HBOC) Syndrome
For more about Hereditary Breast and Ovarian Cancer (HBOC) syndrome and understanding your test results, please see Could I Inherit a Risk of Cancer?, Learning More and Taking Action, Understanding and Managing Your Risk, or visit BRACnow.com.
Back to Top