Living with Li-Fraumeni syndrome
An inherited condition that greatly raises the chance of developing several kinds of cancer, especially in children and young adults.
Understanding Li-Fraumeni syndrome
Cancers most often linked to it include breast cancer, bone cancer (osteosarcoma), and soft tissue sarcomas. Brain tumors, leukemias, and adrenal gland cancer are also common. A very similar condition called Li-Fraumeni-like syndrome shares many features. It can appear at any time in life.
Signs & symptoms
GARD lists the cancers linked to this condition, not usual symptoms. Among the most common:
- Breast cancer
- Bone cancer (osteosarcoma)
- Soft tissue sarcoma
- Brain tumors
- Leukemia
- Adrenal gland cancer (adrenocortical carcinoma)
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include brain and nervous system specialists, cancer specialists, genetic specialists and hormone specialists.
- 3Consider genetic testing
Changes in TP53 are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
- 4Connect with expert centers
FORCE: Facing Our Risk of Cancer Empowered and Li-Fraumeni Syndrome Association may keep lists of experts for this condition.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists); Cancer specialists (oncologists); Genetic specialists (geneticists); Hormone specialists (endocrinologists)
- Expert care
- Expert lists: FORCE: Facing Our Risk of Cancer Empowered, Li-Fraumeni Syndrome Association
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with FORCE: Facing Our Risk of Cancer Empowered and other patient organizations
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
It is caused by changes in the TP53 gene. A person can have it after inheriting one changed copy of the gene (autosomal dominant).
Also known as: lfs; li fraumeni syndrome; li-fraumeni familial cancer susceptibility syndrome; li-fraumeni familiar cancer susceptibility syndrome; li-fraumeni syndrome caused by mutation in tp53; sarcoma family syndrome of li and fraumeni
Patient organizations
- FORCE: Facing Our Risk of Cancer EmpoweredLi-Fraumeni syndrome · United States
- Li-Fraumeni Syndrome AssociationLi-Fraumeni syndrome · United States
- American Cancer SocietyLi-Fraumeni syndrome · United States
- CancerCareLi-Fraumeni syndrome · United States
- Living LFSLi-Fraumeni syndrome · United States
You are more than your diagnosis
Perspectives from people navigating life with Li-Fraumeni syndrome.
Explore research for Li-Fraumeni syndrome
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- Recruiting studies from ClinicalTrials.gov
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- Eligibility is confirmed by the study team
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