Hello all!

My name is Pete.

In August last year, after six months of back and leg pain, I was diagnosed with spinal chordoma.  After two operations (one to removed the cancer nad another to repair the metalwork that broke) I was told the treatment was proton therapy so I'm currently in Florida.

  • Hi Pete!

    i had a chordoma and have been treated for it, my treatment finished about a month ago.

    having had 3 major surgeries to try remove the tumor my surgeon couldn't do it and I finally was referred to another surgeon and he took all of it out in one go.

     Before I was referred again and again to protons but they wouldn't accept me simply because my surgeon wouldn't remove it.

    but in the time these surgeries happened and me finding a new surgeon. The proton beam centre in Manchester opened and once I had my finally surgery with a new surgeon. I was off to Manchester to protons otherwise I would be going to Florida like you.

    hope everything's going well, the 5 year caution zone has probably ended for you now with scans.

    would love to know your story as it's pretty rare that we see people with chordoma.

    as I say, we are one in a million, and that's on science

    best wishes x