Information about chordomas

  • A chordoma is a malignant cancer of the spine.
  • I had a sacral chordoma surgically removed on Oct 8, 2004. Within a few months, there were three tumors where there used to be only one. I had another surgery on Nov 11, 2005, and proton radiation treatments at MGH in Boston, ending in April, 2006.
  • This is a rare disease: only 1 out of every two million people will get a chordoma. According to the medical literature, historically around 50% of chordoma patients die within about 5 years of the onset of symptoms. There is a lot of uncertainty in these statistics, because of the rarity of the disorder, and the odds are improving as treatments improve. In any case, my symptoms sent me to the doctor for the first time in January, 2000, so I'm happy to still be feeling okay.
  • A non-profit foundation dedicated to supporting chordoma-related research (working toward improved treatment and a cure) has been established. Check it out.
  • Latest news from here (password-protected).

    Chordoma studies

  • NCI SEER study This recent paper pulls together results from several smaller studies, and therefore has more believable statistical information.
  • Anatomy of the sacrum (lower back).
  • Management of sacral chordomas.
  • Technical description of chordomas (appearing both as brain and spinal tumors).
  • Another technical description of chordomas.
  • Manifestations of sacral tumors (not just chordomas).
  • Embolization of sacral tumors (again, not just chordomas).
  • Radio Frequency Ablation treatment for chordoma.
  • Carbon beam radiation therapy for large sacral chordomas.

    Stephen Jay Gould's essay on statistics

  • This is a fine essay on how to interpret median survival statistics.