Sacral chordoma treatment experiences wanted

Hi! I’m 50 and despite being fit and healthy have recently been diagnosed with a sacral chordoma. 
My spinal consultant surgeon has recommended 1. Surgery which has a good success rate with low recurrence but lengthy recovery or 2. Proton beam therapy which could be less effective, possibly more likely to recur but much quicker recovery. 
I am looking for your own personal experience of either type of treatment and am particularly interested in its success, recovery time, recurrence and any life changes, in order to make a more educated decision. 
Many thanks

  • Hello Fifty

    I'm sorry to hear about your diagnosis. It's understandable that you want to make sure you have as much information to hand as you can before deciding on a treatment option. 

    I've had a look through the forum and I can't see any other recent posts where people have talked about chordoma. We do have some information on our website about chordomas but I'd suggest having a look at the websites for Chordoma UK and the Chordoma Foundation. As specialised chordoma cancer organisations you may be able to connect with others who have been through these treatments via one of their sites. 

    If you'd like to talk with one of our nurses for some advice and support you're most welcome to give them a call. I know they will be happy to listen and offer any information they can. They're available Monday to Friday 9am to 5pm on 0808 800 4040. 

    Whatever treatment path you choose Fifty, I send you my best wishes for a full and speedy recovery. 

    Jenn
    Cancer Chat moderator