Devoted to a world without inherited cancer

Inherited Cancer2024-06-28T12:42:47-04:00

Genetics Matter

Know your family, know your genes.

Share this information with members of your family.

Li-Fraumeni syndrome (LFS) is a genetic condition that significantly increases the risk of developing many types of cancers.

While cancers may occur at any age there is a high risk for childhood cancer. In fact, over 40% of children with LFS develop cancer by age 18.

Nearly 100% of women with LFS will develop cancer in their lifetime due to their markedly increased risk of breast cancer.

LFS affects both men, women and children throughout the world.

Contact us or ask your doctor if genetic testing should be considered to determine whether you might have Li‑Fraumeni syndrome if you have been diagnosed with:

  • One or two of these different cancers prior to age 46 – and you have one (or more) first- or second-degree relative with one of these cancers:
  • breast cancer (prior to age 56), soft tissue sarcoma, osteosarcoma, brain tumor, adrenocortical carcinoma; OR
  • two or more tumors (not multiple breast cancers), including 2 core tumors, the first of which occurred before 46 years; OR
  • adrenocortical carcinoma; OR
  • choroid plexus carcinoma; OR
  • anaplastic rhabdomyosarcoma; OR
  • breast cancer before 31 years; OR
  • osteosarcoma; OR
  • childhood acute lymphoblastic leukemia (low) hypodiploid; OR
  • childhood medulloblastoma SHH

If you answered YES to any of these, ask our family support team or your care provider if a genetic test is right for you.

A genetic test is empowering because it arms you with information you can use to protect yourself and those you love against cancer.

There are many cancers are associated with LFS, the most prevalent include:

  •  Soft tissue sarcoma (such as anaplastic rhabdomyosarcoma)
  • Osteosarcoma
  • Breast cancer (premenopausal)
  • Brain and central nervous system (CNS) tumors (such as glioma, choroid plexus carcinoma, SHH subtype medulloblastoma, neuroblastoma)
  • Adrenocortical carcinoma
  • Acute leukemia
  • Lung adenocarcinoma
  • Melanoma
  • Gastrointestinal tumors (such as colon, pancreas)
  • Kidney
  • Thyroid
  • Gonadal germ cells (such as ovarian, testicular, and prostate)

What Causes Li-Fraumeni Syndrome?

LFS is caused by a variant in your TP53 tumor suppressor gene, which controls abnormal cell growth and prevents cancers from developing. Everyone has two copies of TP53 in each of their body’s cells. For those with LFS, one of the two TP53 genes do not function properly, or it may be missing altogether.

Most people with LFS inherited the variant from a parent, but LFS can also result de novo, without having affected parents or a family history of cancer. Each child of a parent with LFS has a 50% chance of inheriting the syndrome. For this reason, those who have had cancer at a young age or those with a family history of cancer should ask their doctor or a genetic counselor for a genetic test.

If you are pregnant or considering becoming pregnant, you should discuss the reproductive implications of LFS with your doctor or genetic counselor.

LFS Family Stories

Join us at Li-Fraumeni Syndrome Association (LFSA) to learn more and help spread the word about life-saving benefits of genetic testing and cancer screening

LFSA provides information, advocacy, and support services for individuals and families with Li-Fraumeni Syndrome and those who want to learn whether their family may be affected. LFSA supports a consortium of researchers, medical providers, and caregivers to advance research and promote optimal care for the LFS community.

LFSA is also a supportive community of Li-Fraumeni Syndrome families and survivors. We are the building blocks of a future without LFS. Together we bring together those who share this lifesaving goal.

Stay up to date with LFS news and receive information about LFS research, treatment, support and educational initiatives.

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Li-Fraumeni Syndrome Association
P.O. Box 6458
Holliston, MA 01746

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