If you have been treated for chordoma in the past, receiving the news that your tumor is growing again can be overwhelming. It’s not always easy to know where to turn and what to do. But you don’t have to grapple with these issues alone. The Chordoma Foundation patient services team is here to support you.
As part of our commitment to helping patients and caregivers make the most informed treatment decisions, we are proud to share our newest educational booklet entitled Expert Recommendations for the Treatment of Recurrent Chordoma. It is intended to answer questions about what to do if your tumor returns and how to get the best care possible.
This is the second booklet in our Expert Recommendations series, aimed at helping patients and family members interpret and act upon evidence-based treatment guidelines developed by top chordoma experts. It provides an easy-to-understand summary of the guidelines for treating recurrent chordoma that were published in the Annals of Oncology in June 2017 by the Chordoma Global Consensus Group. The booklet is currently available for download on our website and will soon be printed in hard copy as well.
About the Chordoma Global Consensus Group
Convened by the Chordoma Foundation and the European Society for Medical Oncology (ESMO), the Chordoma Global Consensus Group is a multidisciplinary, international group of more than 60 doctors from the U.S., Europe, and Japan who specialize in caring for chordoma patients. The group first met in 2013 and again in 2015 to develop detailed treatment recommendations for chordoma, resulting in the publication of two pivotal peer-reviewed papers on the topic:
The recommendations in each paper are now available to patients and family members in our Expert Recommendations booklets. Download them here.
The third meeting of the group, in 2017, produced guidelines on surgical margins to help guide surgeons operating on chordomas. Publication of those guidelines is in process, and the group will continue to meet in the future to address further aspects of chordoma treatment as more evidence becomes available on which to base recommendations.
Who will benefit from this new booklet?
Individuals who have been treated for chordoma in the past and are now experiencing a recurrence (tumor regrowth) will benefit most from this comprehensive booklet. Helping to illustrate the treatment guidelines throughout the booklet are a series of flowcharts which walk you through the suggested tests, treatment options, and follow-up steps recommended for different recurrence scenarios.
We designed this booklet to be beneficial to patients, caregivers, family members, friends of patients, and medical professionals around the world. In the coming months, translations of the booklet will also be available. You’ll even find a glossary of medical terms in the back of the booklet to help you get quick access to terminology you may hear from your doctors.
Questions addressed in this booklet include:
- How can I confirm whether I have a recurrence?
- What tests should I get before treatment?
- What is the recommended treatment strategy for me based on my tumor location and treatment history?
How did this booklet come to be?
Written by the Chordoma Foundation’s Patient Services team, this booklet was created to translate a set of highly technical, evidence-based guidelines for treating recurrent chordoma into terms that patients and family members can easily understand and act on.
The driving forces behind the original clinical guidelines on which the booklet was based are Drs. Silvia Stacchiotti and Alessandro Gronchi of the Fondazione IRCCS Istituto Nazionale dei Tumori (INT) in Milan, Italy and Dr. Piero Fossati of MedAustron in Neustadt, Austria. Recognizing the historical inconsistency with which recurrent chordoma had been treated and the need for evidence-based practices to drive better, more uniform care, they worked alongside their colleagues and the Chordoma Foundation to develop a series of agreed-upon treatment best practices that medical professionals caring for chordoma patients with recurrent or advanced disease can refer to. Their efforts were aided by the Foundation’s late Board member and European Liaison, Hans Keulen, who helped to orchestrate the first two meetings of the Chordoma Global Consensus Group before he passed away in late 2015 due to complications from clival chordoma.
Together with the initial guidelines, this booklet helps set the standard for optimal care of recurrent chordomas and provides reliable references upon which to base both patient and provider education.