By any measure, chordoma is a difficult disease to manage. With state of the art treatment from experienced physicians, many patients can maintain good quality of life for long periods of time and some can be cured. However, small nuances in the way patients are treated can have a major effect on their outcome.
So, how does one know the best way to treat chordoma in different situations? Until recently, the answer was not straightforward, as there was no consensus among medical experts. To address that problem, we are working with leading physicians across the world to define evidence-based best practices for treating chordoma patients at every stage of their disease.
As a first step, in 2013, we partnered with the European Society of Medical Oncology (ESMO) to convene a multidisciplinary group of over 40 physicians to develop consensus recommendations for managing chordoma. This meeting focused on the initial treatment of newly diagnosed chordoma patients – the setting in which there is the strongest evidence that differences in treatment can have a significant impact on patient outcomes. In early 2015, the group’s recommendations were published in The Lancet Oncology—the leading clinical oncology research journal, read by tens of thousands of oncologists.
Though a valuable reference for physicians—particularly those outside of referral centers whom chordoma patients are likely to encounter first—this initial consensus statement left unresolved what to do in case of recurrence or progression after primary treatment.
To address this gap, in November 2015, along with ESMO and the National Cancer Institute of Italy, we convened a second consensus group meeting in Milan focused on developing recommendations for treating recurrences. Over 60 physicians from the US, Europe, and Japan participated and 15 groups presented unpublished data about their experience with recurrent chordoma. Through a day of constructive debate and discussion, the group came to agreement on many key principles and produced an early draft of a consensus statement. We are continuing to work with the consensus group to refine and vet these recommendations, with the goal of submitting a second manuscript for publication before the end of 2016.