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Is there screening or prevention for LFS cancers?

Despite a high lifetime risk of cancer in people with Li-Fraumeni Syndrome, it has been challenging to develop a standard LFS screening test or surveillance protocol. This is in part due to the wide array of genetic tumor types seen in LFS, which occur over a person’s entire lifetime. In those with a prior history of cancer, screening is often patient or family specific based on which cancer developed previously in relatives. Again, working closely with a genetic counselor and trusted physician can help you determine the screening methods that best fits your risk. There are many different tests that might be recommended, ranging from blood tests to ultrasound examinations, possibly MRIs and potentially upper and lower endoscopies.

Women with LFS have a 93% risk of developing cancer over their lifetime. One of the most prevalent cancers seen in these women is breast cancer. It is well accepted that breast cancer screening should begin at an earlier age in young women with LFS. This is done with routine exams, ultrasound/mammography and breast MRI. For details on recommended breast cancer screening please see www.nccn.org under the hereditary cancer section.

There have been recent published articles that use PET/CT for screening, yet this has not been adopted due to concern of excessive radiation exposure. More recently, a protocol using a combination of blood tests, colonoscopy, ultrasound, mammography, breast MRI, brain MRI, whole body MRI, and physical exams was reported. The results demonstrated an increase in survival in the screened group, but the series of tests is fairly intensive and time consuming. The long-term results of such a strategy are not yet known and screening and surveillance strategies should be discussed between the patient and their providers.

There is substantial evidence that Li-Fraumeni Syndrome patients may have an increased sensitivity to ionizing radiation. This is something that should be considered when discussing options for screening and treatment with your doctors.

LFS Association

We are families, like you who have been devastated by the effects of Li-Fraumeni Syndrome, a hereditary cancer predisposition syndrome. Our hopes are to educate, raise awareness and find better screening programs and treatments for LFS.

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Medical Resources

We've compiled a list of doctors available to
answer your questions, LFS support and
treatment. They specialize in many different
areas, which have been listed with their
information.

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LFS News

WETB’s Gayle Ong was one of several reporters covering the event and story of LFS and Mo Songs for Kerry.

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Community Events

Carly Grant – Mohawk Hudson River Marathon 2017
Support Carly and the Li-Fraumeni Syndrome Association as she raises money and trains for the Mohawk Hudson River Marathon on October 8th!

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LFS Webinars

Check out our library to watch past LFS
webinars, and to find out about
upcoming webinars!

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LFS Awareness Brochure

Myriad Genetics is proud to partner with LFSA to launch the global LFS Education and Awareness Campaign!


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