I first wrote about the SIGNIFY trial back in August 2012 (http://www.anticancer.org.uk/2012/08/signify-new-uk-lfs-study.html). This is a trial of a new screening protocol for people with Li Fraumeni Syndrome. Instead of waiting and watching for cancer, the idea is that people are proactively screened using whole-body MRI hoping to catch malignancies before they develop. Recruitment started in early 2013 (http://www.anticancer.org.uk/2013/02/lfs-signify-trial-looking-for-volunteers.html). And just before the New Year I was contacted by a young woman called Lara, who was participating in the trial. Her case epitomises the promise of SIGNIFY.
Lara attended her MRI screening at the Royal Marsden Hospital and was then asked to return for a rescan of the liver and kidneys. She assumed that this was nothing out of the ordinary – she was suffering from no symptoms and felt fine. Instead the scans discovered two primary tumours – one on the liver and another on a kidney. Without the routine scans of SIGNIFY these two tumours might not have been picked up until it was too late to do anything about them. As it is she faces surgery at a time when resection is still possible and is still the best treatment.
As Lara herself has told me:
If I hadn't got tested right when I did I think my story would be a very different one. A year earlier and they may not have been picked up at all, a year later it might have been too late.We can but hope that in time the SIGNIFY trial will lead to permanent changes in cancer surveillance for people with LFS. We can hope that it will pick up disease before it becomes life threatening. We can hope that it will save lives. It’s too late for George and Kane and other young LFS sufferers who were diagnosed too late, but we can hope that their stories are not repeated in another generation of young people.
In the meantime I wish Lara, and the rest of the people on the George Pantziarka TP53 Trust forum, the very best for 2014.