Having trouble with insurance coverage of annual screenings as an LFS patient? In consideration of the challenges of LFS and supporting research (reference the Lancet article as supporting evidence), MRI screenings have become the new standard of care adopted by many of the institutions that care for pediatric LFS patients. Please encourage your insurance provider to contact any one of the centers referenced as LFS patient care providers on our webpage for guidance.
DFCI’s Insight: Know your skin and get professionally screened – “Melanoma most commonly arises in the skin and with awareness and examination can be directly spotted in its very early stages – a huge advantage over most other cancers.” http://blog.dana-farber.org/insight/2015/05/screening-tips-for-finding-skin-cancer-early/
American Cancer Society: Consider genetic testing – thus far, research doesn’t show “a lot of long-term distress as a result of getting the information….” In fact, “most people (who test positive for a genetic predisposition) are proactive and engaged in risk reduction behaviors. People who test positive tend to take action through ‘engaging in enhanced screening, risk-reducing surgery, or chemo prevention.'” (Personalizing Care Part 3)
Cure magazine: An Argument for Genetic Testing. “….genetic testing for particular genetic mutations may save their lives if they are vigilant with their lifestyles and screenings – such a diagnosis does not necessarily entail a death sentence.” Additionally, genetic counseling, coupled with genetic testing, may provide immeasurable relief by reducing uncertainties. (March 18, 2015)
Save the date: Tuesday, March 24th, from 1:00 – 2:00 PM, EST. The Colon Cancer Alliance and Community Health Charities are hosting a webinar about colon cancer and your screening options. Learn what to expect during a screening, and register here.
Available in the United Kingdom: Magnetic Resonance Imaging Screening In Li-Fraumeni Syndrome: An Exploratory Whole Body MRI Study. See if you can take advantage of this screening as an LFS patient in the UK. This study is open through the end of 2015: SIGNIFY