I've Tested Positive, Now What?
Cancer risk associated with an inherited mutation
If you have tested positive for a mutation, we recommend that you consult with a genetics expert who can assess your personal and family history of cancer and can help you decide on a plan to manage your risk. Note that when we use the term "men" and "women" we are referring to the sex you were assigned at birth.
People with a mutation are at increased risk for many cancers. The following are the risks for the most common cancers in people with Li-Fraumeni syndrome:
- breast cancer (about a 60% lifetime risk for women)
- soft tissue sarcoma (up to 15% for women; 22% for men)
- osteosarcoma or bone cancer (up to 5% for women; 11% for men)
- brain tumors (up to 6% for women; 19% for men)
- pancreatic cancer (5-10% risk)
- adrenal gland cancer
- gastric cancer
- colorectal cancer
Childhood cancer risk
Many of the cancers seen in occur particularly early in life, including in children and young adults:
- 4% of babies will develop cancer in their first year of life
- 22% will develop cancer by age 5
- 41% of children will develop cancer by age 18
Research has shown that plays a role in many childhood cancers, including:
- 80% of rhabdomyosarcoma with diffuse anaplasia
- 50% of childhood adrenocortical carcinoma
- 40% of choroid plexus carcinoma
- 40% of low-hypodiploid acute lymphoblastic leukemia
- 10% of Sonic Hedgehog subtype medulloblastoma
- 10% of childhood osteosarcoma
FORCE offers many peer support programs for people with inherited mutations.
- Our Message Boards allow people to connect with others who share their situation. Once registered, you can post on the Diagnosed With Cancer board to connect with other people who have been diagnosed.
- Our Peer Navigation Program will match you with a volunteer who shares your mutation and situation.
- Our moderated, private Facebook group allows you to connect with other community members 24/7.
- Check out our virtual and in-person support meeting calendar.
- Join one of our Zoom community group meetings.