Genetics
ALL women diagnosed with ovarian cancer, primary peritoneal, fallopian tube or uterine cancer should be referred for genetic counseling and consideration of genetic testing.
Genetic Counseling and Genetic Testing
Genetic Counseling is a process during which a genetic counselor or other appropriate medical professional will ask a series of questions about you and your family’s cancer history as well as your heritage. This information will be used to assist the genetic counselor in determining if you may be at increased risk. If you have a personal or family history of cancer, undergoing genetic counseling can be helpful and informative in choosing whether to pursue genetic testing.
Genetic Testing is a process in which a blood test may help to determine if you or your family members are at increased risk for certain cancers. The blood test looks to see if you are carrying a gene change passed down to you by one of your parents, that causes a higher risk of cancer. Everyone carries thousands of genes; however, some people carry gene changes that have a high risk of causing cancer. Several different genes can carry changes that cause a high risk of ovarian and/or uterine cancer with the two most common being:
BRCA1 and BRCA2
About 20 to 25 percent of women diagnosed with ovarian cancer have a hereditary tendency to develop the disease. The most significant risk factor for ovarian cancer is an inherited genetic mutation in one of two genes: breast cancer gene 1 (BRCA1) or breast cancer gene 2 (BRCA2). These genes are responsible for about 10 to 15 percent of all ovarian cancers. Eastern European women and women of Ashkenazi Jewish descent are at a higher risk of carrying BRCA1 and BRCA2 mutations. Since these genes are linked to both breast and ovarian cancer, women who have had breast cancer have an increased risk of ovarian cancer.
Lynch Syndrome
Another known genetic link to gynecologic cancer is an inherited syndrome called hereditary nonpolyposis colorectal cancer (HNPCC or Lynch Syndrome). While HNPCC poses the greatest risk of colorectal cancer, women with HNPCC have about a 12 percent lifetime risk of developing ovarian and a 40-60 percent chance of developing uterine cancer.
Family History
Women with a grandmother, mother, daughter, or sister with ovarian or uterine cancer but no known genetic mutation, still has an increased risk of developing that particular cancer. There is a likelihood that these cancers can still be genetic, it is just that those genes have yet to be identified. While it accounts for only a limited number of cases, heredity is a strong risk factor for ovarian and uterine cancer. Family history should be considered; however, many women without a family history may still have a gene mutation associated with the risk for these cancers. All women diagnosed with ovarian, uterine, primary peritoneal, or fallopian tube cancer should be referred for genetic counseling and consideration of genetic testing. Family history of any of the following cancers may indicate an increased risk: Breast cancer, Ovarian cancer, Colon cancer, Uterine cancer, and Rectal cancer.
Will Insurance Cover My Genetic Testing & Genetic Counseling?
Under the Patient Protection and Affordable Care Act (ACA), most health insurers are required to pay for BRCA genetic counseling and testing for women who meet certain personal and/or family history criteria. If you meet the testing requirements, insurance companies must cover the entire cost of genetic counseling and BRCA testing with no out-of- pocket costs to you.
The ACA does not require coverage of genetic counseling and testing for people who do not meet the U.S. Preventive Services Task Force (USPSTF) guidelines, including:
Genetic counseling or testing for people with a family history that suggests Lynch Syndrome (associated with colon, uterine and ovarian cancer) or other hereditary cancer syndromes.
Genetic testing for genes other than BRCA1 and BRCA2 (i.e., ATM, CHEK2, PALB2, etc.)
Finding genetics experts
The National Society of Genetic Counselors website has a search tool for finding a genetic counselor by specialty and location or via telehealth.
InformedDNA is a network of board-certified genetic counselors providing this service by telephone. They can also help you find a qualified expert in your area for face-to-face genetic counseling if that is your preference.
Gene-Screen is a third-party genetic counseling group that can help educate, support, and order testing for patients and their families.
JScreen is a national program based out of Emory University that provides low-cost at-home genetic counseling and testing with financial assistance available.
Grey Genetics provides access to genetic counselors who offer genetic counseling by telephone.
The Genetic Support Foundation offers genetic counseling with board-certified genetic counselors.
Financial assistance for genetic testing for both pre and post diagnosis