Sacral Chordoma

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Hi everyone.

I turn 34 next month and I’ve recently been diagnosed with a sacral chordoma. It’s about 4” in size and currently it’s affecting my urine stream, sexual dysfunction and causing pain in my legs on occasion. I’ve spent two days at the Royal Orthopaedic Hospital in Birmingham for a biopsy just so they can confirm it 100% but the prognosis is quite clear. 

I’m quite worried about the whole surgery and have no clue to what to expect.

Is there anyone who has had the surgery and it been a success. What were the risks involved and did any of the risks actually end up happening.

Many thanks 

  • Well I called my sarcoma nurse in birmingham today and as usual she was wonderful. She was shocked at what happened at my appt yesterday. 


    she is going to sort the scan out. She couldn’t believe I wasn’t even weighted. 
    my lump feels bigger today.  You can see it now too. My neck feels really sore tonight I am wide w awake. Was sweating and soaking wet. 
    ughh when will this end!! 

    my symptoms some days are rent so bad. I can always feel the lump and it’s  not sore tonight touch but it’s uncomfy sitting down sometimes. 
    how are you anyway. I hope you’re ok