Meningioma Brain Tumour Inoperable - Fractionated Radiotherapy Suggested

FormerMember
FormerMember

Hi, I'm a 49 female and was diagnosed with meningioma brain tumour end of November 2018,  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 by the Trust 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 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 

  • I was told by my neurologist that meningiomas are benign in other words NOT cancer. Meningioma are also supposed to be very slow growing and are often just monitored with twice yearly scans. Do you have access to the Clinical nurse specialist at your hospital? It sounds as if you need to ask some important questions to the people who know your particular case. Maybe email or ring the Brain Tumour Trust Charity . They will be able to answer your questions and give you all the information you need about your tumour.

    wishing you all the best 

  • Hi Corkie

    I also have a benign meningioma and have my second scan in July.  I know very little but have been told not to read too much online.  I am in contact via email and telephone with my Consultant's Secretary.  This I find very helpful and reassuring. I also keep a journal that I fill in regarding my general welfare and anything unusual in my day to day routine or otherwise.

    • I shall also bear in mind the information that has been suggested to you 

    Wishing you all the best. Take care.

    Regards Jandeb