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!!
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.
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