Just been diagnosed with secondary brain tumour

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Hi all, I went for an mri yesterday after suffering headaches the past few weeks and I have been told I’ve got a number of lesions in my head. I am absolutely devastated, I have a 2 and a 6 year old and I don’t know what to tell them. I haven’t seen the specialist yet but all the things I’m reading are telling me it’s not curable and I probably won’t have long. I don’t even know what I’m asking, I’m just utterly devastated!!

  • FormerMember
    FormerMember

    Hi Sammystaff

    Im so sorry to read your post. Whilst I don’t have small children I know exactly how devastated you must feel. My husband had 40% of his lung removed in December & was doing really well. Over the past few weeks he’d stumbled a few times, then fell & was taken to hospital where scans showed a number of lesions on his brain. He was put on steroids & anti seizure medication which helped although his balance & co ordination aren’t great.

    We saw his oncologist on Monday & he’s recommended chemo & immunotherapy which he’s sucessfully used to treat a number of patients with the same diagnosis. One has been on the immunotherapy for 4 years & having a very good quality of life, still working training guide dogs.

    Like you we were in despair reading posts, articles & so forth but everyone is different & as the oncologist pointed out, treatment for this is improving all the time so try to stay positive & let me know how you get on when you see your specialist.

    Sending you love & virtual hugs at this horrible time.

     

  • Hi Sammystaff

    Sorry that you find yourself in this awful situation. If I can offer a ray of hope, incurable doesn’t mean untreatable as Kernowp says there are a range of treatments depending on your particular situation.

    When I was told that I had 2 brain mets in July 2017 I thought that was it and I wouldn’t see my 4 year old start school that September. I’ve had 2x craniotomies and 2 lots of SRS (targeted radiotherapy). I have been stable with no evidence of active disease since Feb 2019.

    Not every case is like mine but positive outcomes do exist. Take care 

    Kx

  • Thank you both for your replies. My oncologist wasn’t in today so I have to wait until tomorrow to speak to her so we shall see what that brings.