Hi everyone, I recently have been diagnosed with a skull based Chordoma. Chordomas are 1 in a million. They are rare and that means there have been few studies. A panel of top surgeons met this last friday and a Dr Akagami has agreed to see me and do the surgery. Then appaerently there are only 2 places to do radiation after and that is in Vancouver and somewhere in California. Chordomas return every year or two and so the life expectancy is 7-9 years on average. I need to beat that. I am 47 and have 3 beautiful children and grandchildren now to live for. I do a ton of crying these days. I went from being in control of my life to depending on people for everything. I hate it. I hate this disease. I really want to talk to anyone that has been through a brain tumor of any sort just to realte to and know what to expect i guess.
Thank you