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Learning More and
Taking Action

Understanding and Managing Your Risk

For Cancer Survivors

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Organizations

Background Information

Glossary

“Studies are currently being conducted to test the effectiveness of other breast cancer screening methods in women with an altered BRCA1 or BRCA2 gene. With careful surveillance, many cancers will be diagnosed early enough to be successfully treated.”

— National Cancer Institute,
National Institutes of Health

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Understanding and Managing Your Risk

After talking with a doctor and carefully considering the issues, some people decide they would like to learn more about their risk for hereditary breast and ovarian cancer.

When Testing for HBOC Is an Option
Test Results and What They Mean
Confidentiality and Your Medical Records
Other Risk Factors
Managing Your Risk

When Testing for HBOC Is an Option

If you and your doctor agree that you are appropriate for testing for HBOC, your test result may give you and your doctor valuable information that you can use to make more informed health decisions—sometimes before cancer has a chance to develop.

Three tests are available from Myriad Genetic Laboratories, Inc. You and your doctor will decide which HBOC test is right for you:

Comprehensive BRACAnalysis^® tests for mutations in the BRCA1 and BRCA2 genes associated with hereditary breast and ovarian cancer (HBOC) syndrome.
Single Site BRACAnalysis^® examines a small portion of the DNA for a specific BRCA gene mutation that has been identified in another family member.
Multisite 3 BRACAnalysis^® tests for the three most common BRCA mutations found in people of Ashkenazi, or Eastern European Jewish, ancestry.

To determine whether you need to consider testing for HBOC, which test you need to take, or to understand your results, talk with your doctor. Together, you can plan your next steps.

Test Results and What They Mean

	Negative	Uncertain	Positive
	"No mutation detected" or "Favor polymorphism"	"Genetic change of uncertain significance"	"Positive for a deleterious mutation" or "Suspected deleterious"
Comprehensive BRACAnalysis^®	Your test found no mutations in the BRCA1 or BRCA2 genes. Your risk of hereditary breast and ovarian cancer is significantly lower than the risk of a person who tests positive for a BRCA1 or BRCA2 mutation, but please remember: The test looks for mutations only in the BRCA1 and BRCA2 genes You could still have an increased risk for developing breast or ovarian cancer from other factors	Your test found a gene alteration, but an associated cancer risk is either not known or not confirmed.	Your test found a mutation that increases the risk of developing breast and ovarian cancer.
Single Site BRACAnalysis^®	You do not have the specific mutation you were tested for. This test only looks for a specific mutation that runs in your family; and you still have the same risk for developing breast or ovarian cancer as the general population. Also, there are rare instances in which more than one inherited mutation runs in a family. In such cases, a negative Single Site BRACAnalysis^® result only rules out one inherited mutation.	Because this test looks for known mutations only, there are no "Uncertain" results.	Your test found a mutation that increases the risk of developing breast and ovarian cancer.
Multisite 3 BRACAnalysis^®	Your test found none of the three most common Ashkenazi mutations in the BRCA1 or BRCA2 genes. This is good news, but it is important to remember that other mutations may exist. Comprehensive BRACAnalysis^® can look for other mutations in the BRCA1 and BRCA2 genes that may put you at risk.	Because this test looks for known mutations only, there are no "Uncertain" results.	Your test found a mutation that increases the risk of developing breast and ovarian cancer.

Expanded view of table

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. You could still have an increased risk for developing breast or ovarian cancer from other factors not covered by the test.

For more about HBOC testing, including in-depth information on understanding test results and next steps, visit BRACnow.com.

“Through life we are presented with many challenges sometimes dark, deep and painful. Testing positive for BRCA1 while undergoing chemotherapy for breast cancer provided light and insight to my doctors. I thrive today because of the knowledge and the treatment plan that was created for me based on my genetic makeup.”

— Rivka
Life and Business Coach

Confidentiality and Your Medical Records

Genetic test results are strictly confidential. Test results are released only 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 your test results be given to anyone other than the ordering doctor without your written consent.

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. The Genetic Information Nondiscrimination Act (GINA) is currently awaiting final approval in the US Senate, to complete broad protection of genetic information.

The National Human Genome Research Institute of the National Institutes of Health has more information on genetic discrimination, your privacy, and the law.

The Health Insurance Portability and Accountability Act (HIPAA), enacted by Congress in 1996, required the Department of Health and Human Services to establish national standards for electronic healthcare transactions and national identifiers for providers, health plans, and employers. In addition, HIPAA also contains provisions that address the security and privacy of health data and information.

Here are some helpful Web sites that will give you more information on your privacy rights:

National Conference of State Legislatures
www.ncsl.org

National Association of Insurance Commissioners
www.naic.org

United States Department of Health and Human Services, Office for Civil Rights
www.hhs.gov/ocr

National Human Genome Institute—The Ethical, Legal and Social Implications (ELSI) Research Program
www.nhgri.nih.gov/ELSI/

National Institutes of Health—Office of Legislative Policy and Analysis
olpa.od.nih.gov

The Library of Congress—THOMAS
thomas.loc.gov/home/thomas.html

American Civil Liberties Union
www.aclu.org

Georgetown University Health Policy Institute
www.healthinsuranceinfo.net

Executive Order 13145
www.eeoc.gov/abouteeoc/35th/thelaw/13145.html

Other Risk Factors

Everyone has some chance of developing cancer. Even if you do not have hereditary breast and ovarian cancer (HBOC) syndrome, you may still have the general population risk to develop cancer. Your cancer risk may still be above average due to other risk factors.

Besides a family history of cancer, risk factors for breast cancer include age, history of breast abnormalities, obesity, reproductive history, radiation exposure, hormone therapy, use of alcohol, amount of physical activity, and ethnicity. Talk to your doctor about your individual level of risk.

Besides a family history of cancer, risk factors for ovarian cancer include a personal history of cancer of the breast, uterus, colon, or rectum; age over 55; never having been pregnant; having taken estrogen hormone therapy without progesterone for 10 or more years. Talk to your doctor about your individual risk profile.

Learn more about cancer risk and these topics:

Managing Your Risk

Talk to your doctor about your family history. Your doctor can recommend the specialists you need to see for various medical management options. These specialists may include:

A genetic counselor—for analyzing inheritance patterns and risks, reviewing your options with you and your family, providing education, support, and counseling
An OB-GYN—for routine mammograms, pelvic exams, and more
A medical oncologist—for options such as chemoprevention
A gynecological oncologist—for options such as chemoprevention and ovarian cancer screening
A breast surgeon—to discuss options such as preventive mastectomy, and whether plastic surgery or breast reconstruction is an option after mastectomy if you have HBOC

For more on managing your risk, see Taking Action To Prevent Cancer.