I’ve just been diagnosed with secondary breast cancer, with a Brain Met plus a spot on a lymph node and lung. I am concerned that my cancer team are not giving me the best treatment option for the brain met based on availability of the cyber knife and the fact I have secondary. I would like some advice from anyone who has had the cyber knife treatment. My fear is that I could potentially manage/treat the lymph node/lung with chemo but if they don’t give me the best treatment for the brain met it will all be in vain 
Please can anyone give me some advice on whether the cyber knife is definitely the better option or if I should accept the normal brain radiotherapy, which they are suggesting. Does it have any side effects/disadvantages or poorer result than the cyber knife ? Thank you.
Hello Wensteed
Welcome to the forums, this must be very difficult for you. I’m sure other users will be along to support you soon.
In the meantime, maybe you would like to talk things through with a member of our helpline staff who are there to offer emotional support as well as practical information. The free phone number is 0808 800 6000 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday 10.00 to 2.00.
Best wishes
June, moderator
Hi Wensteed
Sorry to hear of your recent diagnosis. Although I don’t have brain mets I do have bone and liver mets so do understand to some extent how you must be feeling right now.
There has been a recent post from a user called Olives in the living with SBC part of this forum asking a similar question. I did post on that, but don’t understand enough of the treatment options to be of much help. Also another post in the same section from a user called Lemongrove explains a bit more about the funding issues. I will ‘bump’ both threads up to the top so that they are easy to see and hopefully they will be of use to you as well as someone else coming along to give a bit more info. Good Luck with your treatment and come back on here to get more support or questions answered.
Nicky
Hello Wensteed. I suffered two seizures two weeks ago when they did ct scan and found one lesion in my brain 1.8cm. Have had MRI and full body ct which haven’t shown anything else. As a result I was told my case would have to be discussed today by multi team. All sorts of options were referred to by my Onc but the position seems to be a full discussion between all areas is needed to know how best to proceed. Has your case been considered like this do you know? Sorry to hear you have had the same bad news as me. My main issue now is all the waiting around in limbo with no treatment plan.
Hi Wensteed. I had two seizures on 16th Feb. They did a ct scan and there it was. I had had no symptoms before and had only finished herceptin on 8th Jan. I find it hard to believe there is a tumour there as I don’t feel I’ll. I feel like I am waiting ages for someone to recommend treatment but unfortunately I am nhs and was told all the secretaries go home early on Friday so you won’t find out till Monday! I have some savings and am wondering if I should look to self fund. Just no idea what to do and worried it is still growing. My kids are 9 and 13 and I really wanted to make 50 for them. I hope you are able to make an informed decision soon. Let me know what you decide as it may assist me with my decision. My friends and family have been brilliant but no one can understand how you feel unless they have experienced the same. I am thinking of you and wishing you the best. Sarah
Hi Wensteed. So glad to hear things are moving on for you. Especially thanks for the link. I have read it and found it very informative. I feel in a good place for my apt with Neuro surgeon today and am armed with many questions. Olives
Hi Wensteed. I saw Neuro surgeon on Thursday. He said that he believed he could remove my tumour in total with a small margin as well. He said he didn’t know about any other treatments I might need as he was only involved in the surgery side rather than oncologist side. The upshot is I am booked in for a craniotomy next Weds. They will then test tumour and find out exactly what it is and I will then be chasing oncologist to see what else I may need. To be honest I thought they would want to operate and if this is best option to remove as much as possible then I will go with their advice. I am not looking forward to it but am quite calm at moment. Just want it over and done with and see where we go from there. Hope you are able to come to a decision soon. Olives.
Hi Wensteed. As you can probably tell from time of message I am not sleeping much at moment! My tumours 2cm at last scan. They haven’t mentioned chemo wafers but I think I will query when I go in. They just seem focussed on removing it at present. I presume they will then test and find out exactly what it is. My primary breast cancer was HER and ER positive so I had herceptin as well as chemo and I think that is why at present they can see no other spread in body as I only finished treatment on 8 January this year. It was only five weeks later I had seizures collapsed and they found tumour but as I now know the herceptin cannot cross blood brain barrier nor can the chemo I had so I think this is why it grew. Just wish they had done CT scan on regular basis rather than waited for symptoms. When I know exactly what it was I will be wanting to consider whether cyberknfe, chemo tablets that can pass to brain in any way, which I have seen on posts here, or re starting herceptin are options. I think I have to get surgery done first then re discus with oncologist next really but I have done research so 2rr think I am armed with quite a bit of info now. I am having my treatment at Coventry University Hospital and live about half an hour from the there. Where are you? We seem to have been diagnosed around same time in Feb. I am just hoping my opinion not cancer cancelled for any reason now and want it done. Thinking of you as I know how you are feeling. Olives
Hi Wensteed. Just to say sorry for any previous typos. Obviously posting at 3.00 am was not such a good idea. Olives. Also tumour is in left temporal lobe and they have said could be in hospital for 5 days but won’t commit to anything else.
Thanks June. PM sent. Olives
Hi all, I am new to this site. I start WBRT next week and am terrified. Found out last year I had a solitary met that was treated successfully with steriotactic radiotherapy . Now one year later there are 2 more small ones in a different place. Because “more than one”’ the option is for WBRT, 5 fractions. I have read nothing that is encouraging about this treatment . Would like to hear from anyone who has been through this and are doing well. Btw, I have triple neg BC diagnosed 5 years ago.
Hi 1954
I had WBRT last October - 5 fractions. I had no problems with the treatment. My hair fell out 2 weeks later & I started feeling very tired. It’s hard to say how I’ve been since as I’ve been on 18 weeks of paclitaxol which comes with its own side effects. I see the oncologist for scan results on 14th April. My cancer is quite widespread so I’m expecting mixed results.
Mildred1602