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Hereditary cancer is cancer that occurs in a person or family due to an inherited risk factor. In these cases, a person has a change in their genetic material that is either inherited from a parent or new in that person. This change, or mutation, increases their chances of developing certain types of cancer and is found in small pieces of genetic material called genes.
Our bodies are composed of millions of cells. As a normal process of life, our cells grow, divide and die.
Cancer usually begins with a single healthy cell. Over time, damage may occur and accumulate within a cell. The damage, also called a mutation, may disrupt the cell's control mechanisms, allowing the cell to grow and divide out of control. As this cell divides into many cells, they may form a mass called a tumor. Cancer cells also have the ability to spread throughout the body, or metastasize, which may result in tumor formation in other parts of the body.
Our DNA is the genetic material in every cell that serves as the blueprint for our body development, growth and function. The DNA in our bodies forms approximately 20,000 genes. Our genes come in pairs; one of each gene is inherited from each parent. Mutations that alter the way the genes function to control cell growth and division increase the risk for cancer to develop in people who have inherited them.
It is possible that a family may have a single gene mutation that puts certain family members at an increased risk to develop certain types of cancer. While we do not choose which genes we inherit or pass on, the altered gene can be passed from parent to child and results in an inherited predisposition or susceptibility to develop cancer.
Approximately 1 in every 2 men and 1 in every 3 women will develop some type of cancer in their lifetime; 1 in 300 during their childhood. About one in 10 people (including children) who develop cancer have had the diagnosis because of an inherited risk factor. It is important to remember that inheriting a predisposition to cancer does not guarantee it will occur.
Most cancer cases are not due to an inherited cause, but rather occur as a single occurrence. This sporadic occurrence of cancer accounts for approximately 80-85% of cancer cases. However, when we do see a cluster of cancer in a family, there are several possible explanations:
Your doctor or genetic counselor can help you determine if your family history suggests a hereditary risk for cancer. In general, your risk of having an inherited form of cancer is highest in the following situations:
Genetic testing at Children’s Hospital Colorado typically requires a blood draw or a sample of tumor tissue. We then send that sample to a laboratory for analysis of specific genes to determine if there are gene mutations associated with hereditary cancer.
Whenever possible, it is best to begin genetic testing with a person in the family who has had cancer. If your child has had cancer, they may be the best first person in the family to test.
If your child has not had cancer, your genetic counselor will help you identify the best testing strategy in your family. If a gene mutation is found in one family member, then genetic testing can be made available to other relatives to determine if they have inherited the same gene change.
If a gene mutation is found, this means your child has a hereditary risk to develop cancer. Although no form of cancer screening or prevention is perfect, options may include increased cancer surveillance (such as beginning mammograms or colonoscopies at earlier ages or having ultrasounds or MRIs), taking certain medications that can reduce the chances of developing cancer, and/or having surgery to remove at-risk tissue before cancer develops.
Your genetic counselor and your child’s doctor will help determine which of your relatives are also at risk to have a gene mutation. You would be strongly encouraged to inform your relatives of your test results if a mutation were detected so that they can have the option of talking to their physicians about genetic counseling, genetic testing and appropriate cancer screening.
If no gene mutation is found in the first person in a family to have genetic testing, then this test result has several possible meanings. Your genetic counselor will explain all of the potential reasons that genetic testing did not find a gene mutation.
If you have a relative with a known gene mutation and your test results show that you do not have the gene change previously found in your family, then your chances of developing cancer are probably no higher than anyone else’s in the general population.
Genetic counseling is a confidential face-to-face communication process between your family and your genetic counselor. Your genetic counselor will work with your physicians to make recommendations for your child and your family regarding your medical care based on your evaluation. Genetic counseling may include:
Children’s Hospital Colorado currently has the only cancer genetic counseling program specifically for the evaluation of hereditary cancers in children in the state of Colorado.
Genetic testing may help you and your family to more accurately plan healthcare strategies. It may provide some peace of mind, discovering that your chances of developing cancer are not as great as you believed. Genetic testing can also determine if you have an increased chance of developing certain types of cancer and allow you and your relatives to take more proactive steps to detect cancer earlier or to prevent cancer.
There are many things to consider when deciding whether or not to have genetic testing that may be discussed during genetic counseling, including:
Genetic counselors are trained to help you explore your feelings and opinions about genetic testing. The results of genetic testing impact the whole family, not just the individual being tested. It is unlikely that genetic test results will have an effect on an individual’s ability to obtain or keep health insurance. Your genetic counselor will review with you the laws in place protecting genetic health information.
You can investigate the possibility of hereditary cancer in your family with a genetics consultation through the Center for Cancer and Blood Disorders (CCBD). Talking with a genetic counselor can help you learn about inherited cancer and what steps you can take to prevent cancer and/or detect it as early as possible.
Following the consultation, an individualized plan, which may include genetic testing and/or cancer surveillance and prevention strategies, is established based on physician and genetic counselor recommendations and family decisions. An appointment in the Center for Cancers and Blood Disorders’ (CCBD) Hereditary Cancer Risk Assessment Clinic includes a consultation with the CCBD genetic counselor and an oncologist (cancer doctor).
Children’s Colorado established the first genetic counseling program for the evaluation of hereditary cancers in children in the state of Colorado. The clinic’s American Board of Genetic Counselors certified genetic counselor works closely with CCBD physicians to provide cancer genetic counseling services.
If you are concerned about your family history of cancer or would like more information about genetic counseling, ask your CCBD medical care team or primary care provider about making a referral for genetic counseling. You can also contact one of the genetic counselors directly: Kami Wolfe Schneider, MS, CGC at 720-777-2627 or Alexandra Suttman, MS, CGC at 720-777-2265 or visit us online at childrenscolorado.org/geneticcounseling.
Certified Pediatric Nurse Practitioner