Hi,
I am really sorry if I am repeating something that has already been said on this forum but I cannot seem to find the answers to couple of specific questions that I have.
I was first diagnosed with brain mets in the end of Feb 2012 and had whole brain radiotherapy immediately. When I had scans in May they were promising, it looked like things are improving and there was no progression anywhere else. However, my scans in August showed completely the opposite - I have some progression of the disease in my chest (I has double mastectomy in Feb) and for the last week or 10 days I started to have bad headaches and now double vision. Today I went for another MRI of the brain - to cut the long story short the cancer is back in my brain.
The oncologist (who is very good and I completely trust her) said there is probably not much they can do apart from steroids to help with side effects (I have been taking 8mg for the last two days and the headaches have stopped but I still get double vision). When I left today she said she would talk to the neurosurgions and ask them to look whether I would benefit from the surgey. She phoned me this afternoon saying that their oppinion is that I would probably not benefit from taking the individual bits out (I think it is because there are too many and they are not that big) but that they need to look a bit better. She also asked them about looking whether some fluid can be drained out, if there is any?! Not 100% sure what that means.
Radiosurgery is not available at the hospital where I am being treated (Oxford), but I askedd if I can be refered somewhere else for that. Well, her answer was that she can but it wouldn’t be funded on NHS and each operation costs about £12000. Unless the neurosergions thought that they can’t help and that radiosurgey (cyberknife or gammaknife) was the better option.
I am interested to find out if anyone has been in a similar situation and had radiosurgey on NHS? Where did you get it done? Where did you get it done even if you had private insurance which has covered it?
Has anyone been in a similar situation, i.e. had recurrence in the barin and how did you treat it, if so?
I am about to start new chemo Iribulin to treat the disease elsewhere in my body (mainly chest) in 10 days, but I am still not sure that I will go ahead with it. Depends what happens with the head, as that is now priority. And according to the oncologist the chemo wouldn’t go to the brain.
Anyway, not the best situation to be in, but it could still be worse. I am not giving up especially because I have been feeling fine, I am only 37 and have got two small children (1 and 3).
Zeljka
Sorry that I do not have any experience of treatment for brain mets myself but there has been discussions before about it on here. I wil have a look to see if I can bump up the last thread on it but not sure if I wil be abe to find it. There is a lady called Lemongrove who knows a lot about cyberknife and treatments and she may well see your post tomorrow and get back to you. Have you tried phoning the helpline at BCC? You could give them a call tomorrow if you feel inclined. I will go on the hunt now and if I find previous posts I wil bump them to the top of the latest posts for you. I am a bone mets lady who has been having treatment for years. I can only add that I am thinking about you and wil look out for any new posts on this thread you have started. From Val
I am sorry to read your news. Scottishlass is right, Lemongrove has a good knowledge of cyberknife, she has been involved in setting up a charity support site and has kowledge about fuding/charities that might be able to help. I suggest if she doesn’t notice this post that you PM her. Funding is very tricky it seems to be a bit of a lottery but often gamma knife is used if cyberknife is not available. I’m sorry I can’t help more but hope you get some answers. I shall be thinking of you and sendind lots of positive vibes your way. Julie
Hi Zile
I have brain mets but I haven’t had WBR i had Gamma Knife instead. I am pretty sure that it is often possible to have gamma knife after WBR but it does depend on a number of factors - how many tumours are still growing, where the tumours are located, their size and finally how high a dose of radiation you have already experienced.
You really need to talk to a gamma knife specialist to find out if you are eligible. Your onc is unlikely to be able to make that call. My onc is at the Marsden in London and he referred me to a specialist at the Cromwell to find out if it would work for me.
I had my treatment privately but I know that Gamma Knife can be done under the NHS, I’m not sure if every health authority funds it though. Your onc should be able to refer you to a GK consultant to find out if it is something you could do.
If she is unwilling or unable and I were you If I were you I would go to see someone privately (I can pm you the name of my consultant if you like) find out if I was suitable and then ask about NHS treatment- the only thing is I have no idea how much that would cost and it might be prohibitive, so that might not be a sensible suggestion. I think that you have the right to be referred on the NHS, so maybe I am being overly negative thinking that your onc wouldn’t do it.
As far a cyberknife is concerned, it is a fantastic treatment but is usually better for other body mets - lungs, liver, bones etc. cyber knife uses ct scans to detect the tumours. GK uses MRI scans which give a more accurate picture of the brain.
GK is only used for brain tumours and is considered to be the 'gold standard ’ for brain met treatment. The only downside of GK is that they fit a head frame to lock your head in place - although you don’t really want your head moving around during treatment!
If you want to see how it works put a search for ‘gamma knife surgery’ into you tube, there are lots of clips showing how it works
Best of luck, please get in touch if you want to ask me anything
Melissax (tillycat)
Ps I had brain mets diagnosed in may 2011, still here now in 2012. If you want to talk to or read about women who have been around with brain mets for even longer then go to
And look up the thread called ‘brain mets sisters’ - there’s lots of women from the USA and the uk posting on there
Hi Tillycat,
My wife has just been diagnosed with 2 small brain mets. She’s now booked in to have Stereotactic Radiosurgery (SRS) starting in a few days at Hope Hospital in Salford (NHS). From how the procedure has been described, it sounds the same as the GK procedure you mention in your post.
She is very worried about the tumours coming back afterwards or new ones constantly developing - is there any re-assurance or any statistics available on that front ?
Also, did you manage to continue your life (relatively) normally through the treatment ?