Thinking about cancer or dealing with cancer risk can be scary or overwhelming, but we believe that receiving information and resources is comforting, empowering, and lifesaving.
Families share more than genes, physical features and medical traits. Other common elements—backgrounds, relationships, and dynamics—sometimes affect communication between family members.
In some families, cancer, breasts and ovaries are considered very private matters never to be discussed. Cancer and other illnesses are often associated with a stigma in our society. Some family members may be superstitious about discussing cancer, believing that may invite the disease and make it more likely to happen. This lack of communication can impede sharing of critically important health information between relatives.Despite these challenges, it is important to share medical information with relatives. Cancer and many other diseases can have a hereditary component. Screening or risk-management recommendations are different for people who are considered “high risk” due to a family history.
The best way to discuss health information is individual and depends on your relationship with relatives. Here are some tips for sharing:
Geneticists, genetic counselors and other medical experts in hereditary disease (see our Finding a genetics specialist section) examine a family’s medical history to determine the likelihood of a hereditary component. They consider which family members were diagnosed at what age, and how they are related to other family members. Typically a genetics specialist looks at three generations of a family’s medical history to determine if there is a hereditary pattern. You can assist them by compiling medical information from both sides of your family including:
The more detailed the information (actual diagnosis, type of cancer, location), the more helpful it can be. Hospitals are not required to retain records beyond 10 years, but they sometimes have older records available.
It’s equally important to share your medical information with relatives. Request copies of your records and lab reports to keep for your own personal records. A genetics expert can determine which information will be most helpful to your relatives.
Hereditary cancers are unique from other cancers because the risk can be passed on to children. Sharing cancer risk with children -- both adult and minor -- can be difficult and complicated. Issues include the best age to share information, how to share information with children, and what information is appropriate to share. Although it’s natural for parents to want to protect their children from difficult topics, children are already exposed to the disruption that cancer causes in families: the agonizing decision making, family members undergoing treatment and surgery, or loss of a family member to cancer. Absent an explanation they understand, children form their own beliefs, which may be based on incorrect information and can be difficult to resolve later.