Living with Li Fraumeni Syndrome

I don't think anyone can ever be prepared to hear they have cancer. The last thing a person wants to think about when dealing with cancer is the possibility that they might have a family cancer syndrome.  We can't change our genetics. We cannot change the fact that we may have inherited a dysfunctional copy of the major tumor suppressor gene, TP53 or p53 as most of us call it. We can change how we view our life and the steps we can take to LIVE with Li Fraumeni Syndrome.We hope this will be a place where we can share our stories, our experiences and through mutual support- help each other navigate these bumpy waters of Living LFS. There are ups and downs and sometimes there can be a lot of negatives when dealing with cancer after cancer- either our own or watching those we love fight this disease. Through these experiences an amazing strength and spirit is born and we can share a lot of the positives and lessons learned here. Some of us become researchers, others doctors or nurses, teachers or lawyers and many are still trying to just get through the day. Sometimes finding someone with a shared experience can help us get through that day and hopefully make each day a little easier and a lot better. The key to living with LFS is LIVING!We will be doing monthly features on LFSers, cancers, treatments, screening, research and all things LFS and LFS-like! We want to tell the stories of those who are fighting and who have fought to help their memories live on.  If you have a story you would like to share, questions or topics you'd like to see here- please send an email to


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