I have cordoma. It is a cancer that was removed from my spine. It was in the L-5 area. I was looking for other people who have or know of anyone who has this type of cancer. Please e-mail. Thank you!
Hi there Jeane,
I was originally diagnosed with a chordoma of the skull base but it turned out to be a chondrosarcoma which is in the same family. These two usually appear in the upper body but rarely in the brain. Anyway, since these 2 types are not usually responsive to chemo the other option we have after surgury to get our margins clear is proton beam therapy. I had it to the remaining piece of tumor on the brain stem. I wanted to tell you about this type of radiation because its not widely know of they offer it at Harvard University in Boston and at Loma Linda california. Its seems to be quiet effective for both these types of tumors. Ask your doc about it.
jeane - I had a sacral chordoma on S-4 and S-5, at the very end of my tailbone. Tailbone and tumor removed 12/14/04 at Massachusetts General Hospital in Boston. I live in Akron, Ohio, but went to Mass. General because they have a protocol treatment plan for chordoma patients. My surgeon was Dr. Francis Hornicek. He's the BEST! I would love to correspond with you about how you are doing now. I have urinary incontinence as a result of my cancer treatments and must catheterize myself daily. I have had 7 UTIs (Urinary Tract Infections) since my cancer surgery. I also continue to have surgery site pain, especially when getting out of bed or up from a couch or chair. My regular e-mail address is: email@example.com, or my user name in the cancer chat room is RockinRobin. Thanks in advance for your reply. - Robin Zoesch