Screenings matter!! Listen to JAMA Oncology’s podcast interview with LFS Association Medical Advisory Board member and leading author of the 2017 publication, “Prevalence of Cancer at Baseline Screening in the National Cancer Institute Li-Fraumeni Syndrome Cohort,” Dr. Sharon Savage, MD, Chief of Clinical Genetics Branch, Division of Cancer Epidemiology, National Cancer Institute. Dr. Savage touts the successes of early detection with the recommended screening protocols. Of those followed at NCI for this study, researchers uncovered new, asymptomatic primary cancers in 7% of the 116 LFS patients. Of these, 7 out of 8 cancers were cured by surgery alone!
“Cancer Screening Recommendations for Individuals with Li-Fraumeni Syndrome.” Published in June 2017, new screening recommendations by the world’s leading LFS researchers are now available! Based on an international collaborative effort, researchers recommend a modified version of the “Toronto Protocol,” to include physical exams, blood tests, and imaging. They further recognize the need to evaluate the feasibility and effectiveness of surveillance and preventative strategies while addressing the psychosocial needs of those living with LFS. (Clinical Cancer Research; 231(11); e38-e45. June 2017)
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