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While most cancers occur by chance, it is estimated that 5-10% of cancer is inherited in families. Hereditary cancer occurs when an individual is born with a genetic change (often called a pathogenic variant or mutation) that increases the likelihood of developing certain types of cancer.
Cancer genetic counseling can help you learn about the impact your personal and family histories have on your chance of developing cancer. It can also help you understand your options for prevention, early detection, treatment, and the risk to other family members.
In order to accurately assess your cancer risk, we collect important information regarding the cancer history in you and your relatives. This involves obtaining an accurate family history regarding the occurrence of cancer(s) in you and your immediate and extended family – your children, siblings, parents, grandparents, aunts, uncles, and cousins on both sides. The type of cancer and the age of onset are extremely important in gathering this information.
While there are still unknown genetic factors that may increase the risk for cancer, significant advances have been made in identifying gene variants that increase a person’s risk of developing the disease. These variants are typically inherited in families and can be passed down from parent to child. Some common examples of inherited cancer conditions include:
Some common reasons to consider genetic counseling and genetic testing include:
An evaluation with a cancer genetic counselor could provide you with information about your own cancer risk and ways to reduce this risk. It will also help your doctor develop a screening plan unique to you.
Genetic counseling can also be helpful for your family members. They could learn who may be at an increased risk of developing cancer and might benefit from increased cancer screening and management.
Genetic counselors are certified professionals who have specialized training in genetics and risk assessment. They help educate individuals so that informed decisions can be made about their genetic health. Genetic counselors can also provide guidance and support surrounding interpretation of genetic test results and discuss information about such things as:
A risk assessment is a detailed conversation with a genetic counselor where you talk about the likelihood that the cancer in your family is inherited and the likelihood that you may develop cancer. The genetic counselor will ask you questions about your family ethnicity, health history, and your risk factors. If there are signs that hereditary cancer may run in your family, the genetic counselor will talk to you about genetic testing and what the results might mean for you and your family.
If you have a greater risk for cancer due to family history alone or due to a hereditary cancer syndrome, we will discuss the steps you can take to help reduce your risk. These recommendations may include more frequent cancer screenings, lifestyle changes or other steps you can take to lower your risk.
Genetic testing involves looking at a person's genetic information (DNA) for changes associated with an increased risk of developing certain cancers. This testing may reveal whether the cancer risk in a family is passed through their genes (inherited). When possible, genetic testing should begin with a family member who has had cancer.
Genetic testing is a powerful tool and raises many important issues for individuals and their families. If genetic testing is indicated, a genetic counselor will tell you about the available tests and help you decide if testing would be useful to you. The testing process is different for every individual. By going over which tests are right for each person and taking the time to review and talk over the possible results, a genetic counselor helps patients to understand information, answers any questions, and spends time listening to a patient’s considerations and concerns related to genetic testing.
Together, your genetic counselor will work with you to determine if testing is right for you.
Genetic testing can be beneficial for a number of reasons. If there is a personal history of cancer, genetic testing may explain what contributed to the disease. In individuals who have a family history of cancer, it may help them better understand what their cancer risks might be and what screening strategies are available to help lower the risk for cancer and/or detect the cancer at an earlier stage. Genetic testing can also impact treatment decisions. As hereditary cancer syndromes are typically inherited, testing can give families important information to help identify other family members who may also be at risk.
Genetic counseling is one piece of the genetic testing process. Information gathered during a genetic counseling visit determines if genetic testing may be helpful to you. A genetic counseling session may include:
If you are interested in pursuing genetic testing, your genetic counselor will work with you to ensure the correct test is ordered based on your personal and family history, as well as the amount of information you are interested in learning. If you do not want to pursue testing, your genetic counselor will help you understand other options that may be available to support your overall health.
Cancer genetic counseling is usually covered by your insurance if you have a referral from your primary care provider. As with any specialty appointment, co-pays are dependent on the type of insurance.
Genetic testing is covered by most insurance companies if certain criteria are met. Discussing insurance coverage is a component of genetic counseling.
Legislation including the federal Genetic Information Nondiscrimination Act (GINA) of 2008 protect against discrimination based on genetic information by health insurance companies and employers. However, this law does not apply to life insurance, disability insurance, long-term care insurance, or the military. It also may not apply to some individuals who work for a very small business. If you are interested in more specific information, you can read more at https://www.genome.gov/about-genomics/policy-issues/Genetic-Discrimination.
In 2023 we held the Lynch Syndrome conference an educational event for patients, families, and providers. See all the sessions below.