If you have just been diagnosed with a Chordoma, you are probably terrified. Cancer is scary; given the typical location of Chordoma tumors — usually in the clivus, the sacrum, or the coccyx — Chordoma is very scary. You will need surgery; you probably need radiation; you might need to try experimental chemotherapy. That's the admittedly bad news.
There is also good news. There is more active Chordoma research than ever before, thanks to dedicated researchers and the Chordoma Foundation. There is reason to hope for a much better treatment -- or cure -- in the future; one that will benefit you. Assuming the funds can be raised, there is reason to be cautiously optimistic.
Furthermore, there are a lot of fanatical chordoma survivors who are more than willing to help you find the best treatment and offer support. This might not be the club anyone would want to join, but it is comprised of some pretty fantastic people.
You've probably already read the Chordoma entries on Chordoma and eMedicine. They are a bit technical for a newly diagnosed patient. The Chordoma Foundation has done a better job of summarizing Chordoma for the uninitiated: Chordoma Overview and Chordoma Frequently Asked Questions.
For a really detailed look at the experiences of people with Chordoma, browse the support group.
To stay up-to-date regarding new developments in Chordoma research, fundraising, and the community, please visit my Chordoma blog, and the Chordoma Foundation homepage.
In the very near-term future, chordoma.net will offer a support group specifically tailored for Chordoma featuring simple forums, blogging, and patient finders. Until then, please visit the Chordoma Support Group.
You have a better chance of knowing someone who was struck by lightning last year, than knowing someone with a Chordoma. Without patient advocacy, there will not be enough medical interest in Chordoma. For such a rare disease, patient advocacy means fund-raising. For chordoma, that means giving to the Chordoma Foundation.