Inoperable Meningioma - Fractionated Radiotherapy Suggested

FormerMember
FormerMember
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Hi, I'm 49 female and was diagnosed with meningioma brain tumour end of November,  I got an MRI, seen neurologist and neurosurgeon and told I had been accepted for gamma ray knife treatment in Leeds as we don't have that facility in Northern Ireland. I have been so positive and ready to take this on, just a week before we were due to go they have informed me a mistake had been made and I can't have the gamma knife treatment as too risky and could blind me. I am absoluteley devestated

My tumour is 2.5cm and located in the petrous which is a high risk location for surgical removal. My only option now is fractionated radiotherapy for 6 weeks x 5 days a week. I'm desperate to find out if anyone has had this radiotherapy treatment and was it a success, I have been told the radiotherapy is to stop growth of tumour but scared if it doesn't work will this be classed as terminal.  Any information on this would really be appreciated as I am feeling very lost and scared about my future

Thank you 

  • Hi and a very warm welcome to the online community

    Although I have not had a meningioma I can understand why you'd be devastated when you discovered an operation you had planned for would not now be going ahead.

    I have looked on the Macmillan website for you and found this information on treating meningioma with radiotherapy. You could also post your question in ask about radiotherapy and radiographer Kate will try to respond within 2 working days.

    Wishing you all the best

    x

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  • FormerMember
    FormerMember in reply to latchbrook

    Thank you, I will do that. 

  • Hi Corkie, I have an inoperable meningioma on the skull base, I was diagnosed 5 years ago. I had fractionated radio therapy for 6 weeks 5 days a week three years ago. The meningioma was interfering with my optic nerve and the pituitary gland so I was seeing 3 different consultants who were all liaising regarding my treatment. 
    I am fine three years on, my peripheral vision has come back within normal range and I have an MRI every year now (it was every six months). I see all 3 consultants annually - neuro oncologist, endocrinologist and ophthalmologist. I feel very well looked after and I’m confident that I will live a long life. I’m 56 now. 
    The treatment sessions were quite short, approximately 15-20 minutes each. 
    I hope this goes some way to easing your worries. 

    from Mabes

  • Hi 

    I have had radiotherapy and chemotherapy for an inoperable brain stem tumour and although this has had side effects, my last mri showed it is stable, so it does seem to stopped the growth.

    I have to go to Birmingham every day for  6 weeks, But the treatment of self was very quick.

    Hope this helps hope this helps