Recognizing Hereditary Cancer Syndromes

For Patients & Parents

If there are many cases of cancer in your family, especially at young ages, your family might have a hereditary cancer syndrome. A hereditary cancer syndrome is a group of cancers that run in families and have the same cause. The hereditary cancer syndrome commonly linked to TP53 is called Li-Fraumeni Syndrome (LFS). People with LFS have a very high risk of developing cancer in their lifetime, as high as 80 percent in men and close to 100 percent in women.

The most common types of cancer in LFS families are adrenocortical tumors (ACT), breast cancer, brain tumor, bone or soft tissue cancer, and leukemia. The main difference in risk between men and women is due to the high rate of breast cancer caused by the syndrome.

There is also a syndrome seen in lower risk families called Li-Fraumeni-like syndrome (LFLS). Having LFS or LFLS gives you a much higher cancer risk than normal, but LFLS usually causes different types of cancer than LFS.

To find out if your family has a hereditary cancer syndrome such as LFS or LFLS, your doctor or genetic counselor will ask about your family history of cancer. They will want to know the number of people in your family with cancer, how they are related to each other, and what types of cancer they have had. Your family history is important to finding out the cancer risk in your family.

If you have family members who have had cancer, ask for copies of their medical records to share with your child’s doctor and genetic counselor. If that is not possible, try to find out exactly what type of cancer they had and how old they were. If a family member had cancer in more than 1 (one) part of the body, try to find out if doctors thought it was 1 (one) type of cancer that spread or different forms of cancer that started separately. If you find out more or a new cancer develops in your family, please tell your child’s doctor and genetic counselor as soon as you can.