Online Research Tips

TIP: Chordoma’s are rare and there is not a text book answer to everything yet so be prepared to encounter many different opinions which can be confusing.  There are some opinons that are generally accepted by all but for the most part, there is still a lot of debate and research to be done.

TIP: Don’t dwell on the 7-9 year survival rate.  Everyone is different and everyone’s case and treatment is different.  Treatments have improved greatly also.  There are many people living way past 7 years and hopefully you will connect with them online at some point during your research.

TIP: Not everyone’s treatment or recovery story will be like yours.  Yours might not  be like the story on our website.   It depends on your specific tumor’s behavior, the exact location, the surgical approach (if surgery is possible),  the surgical team, your follow up treatment, and how you react and heal as an individual, etc.   Only your surgeon can really tell you what to expect.

TIP: Check out support groups, it makes a big difference to be able to talk to other patients.  We found it very helpful to speak to other patients about their experience and because it is a small community, most are are very helpful. Check out our Inspiring People page for more.

TIP: When searching for hospitals that perform surgery for chordoma, look for hospitals with specific departments  or centers dedicated to skull base surgery.  We liked hospitals that had a team of surgeons focused on skull base surgery – including neurosurgeons, ENT’s, and Ophthalmologists.  We wanted a team approach.  Ideally, the neurosurgeon is comfortable with both endoscopic and open (craniotomy) approachs to the skull so that they will be able to pick the best approach for you – not the only approach they do.   

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