What should chordoma patients look for in a treatment team?

Probably the most important thing for a
chordoma patient to look for in their treatment team is experience. Chordoma is a very rare tumor and many physicians are very unfamiliar with or
uncomfortable with treating chordoma. There are also a lot of subtleties in
the treatment of chordoma, the behavior of chordoma, and the timing of different aspects of treatment that only can be gained with experience. The first and the most important thing is to make sure that they are at a major referral center
where there is likely to be some multidisciplinary expertise, because it’s
not just important that they are in the hands of a good surgeon or a good radiotherapist or a good medical oncologist, they do need good help from the
diagnostic team – like the radiologists and the pathologists. I think one of the
major disappointments and challenges in this field is that with the best of
intentions – patient had symptoms, somebody diagnosed a tumor, they go to the local physician three blocks down the road, and they – with good intentions to help do the
best they can to help – the problem is that it created a new problem. And it’s impossible even for the most expert of teams to clean up that mess. I’m so disheartened when I see a patient come into my clinic and they have been treated by facilities that might be excellent facilities but they’re just
not versed in how to take care of these tumors. And therefore they’re starting
behind the eight ball from the very beginning. Places like the Chordoma
Foundation help guide patients to finding what are the chordoma centers
across the world, and I think that’s one of the number one things that patients can do for themselves.