hiya all i was wondering if any one out there with secondary breast cancer on the brain could help me …i just wanted to know how long after dx did u have your op as i feel like im waiting a long time .i know doctors know what they are doing but im just really anxious at the moment many thanks xxxx
Hi there
Not sure you have posted this on the right place - can you describe a bit more about your situation?
Cathyx
Hi mojomac,
I cannot help you, but I hope that if I bring this post up to the top again someone will
Take care
Hi - I personnaly havent been diagnosed with this but my sister has. She hasn’t had an operation but waited about 4 weeks to start treatment although Christmas week was in the middle. She had had radiotherapy and is doing ok.
thanks for the replys …i was told on 23rd of dec tht my cancer was back on my brain after being in remission from breast cancer for nearly two years and have as yet to recieve any treatment apart from steroids and i feel like im gettin worse day by day .due to have an mri on fri 6th of feb to make sure its still in the 1 place just feel like its been a really long time or am i just worrying to much …any advice would be greatly appreciated love to u all xxxxx
Hi sorry to hear that you are still waiting and can understand how frustrated you are. Presumably the steriods are taking away the swelling but I know from my sister that they can cause your face to swell making you feel worse rather than better. My sister stopped taking the steriods once she had had her course of 5 rads and she is feeling much better and can at least sleep now (she barely slept whilst taking the steriods). Hopefully you wont wait much longer after you have had your MRI - Have you been told whether they can operate or not? XX
hiya get my results from my mri 2moro …will thn find out if they can operate .really want to know but also nervous incase its more thn 1 thanks for the replys and kind words and ill let you know how i get on xxxxxx
Good luck tomorrow, mojomac!
xxx
Best of luck Tomorrow mojomac. I hope your results are really good. I was told a week ago that I have multiple brain mets but that they’re still small right now, but later that the gamma knife might be an option.
I’m loading up with info right now. GP told me yesterday that I really do need to consider not seeing the end of the year and just live my life.
Who’s for a glass of bubbly?
Holly… Do you mind me asking how the brain rads helped your sys? It’s been a week since I had mine and I’m now reducing the steroids by one a day as per docs orders which is good cause I hate them too. But I’m worried about having another seizure and in all honesty am a little scared to even close my eyes right now. It’s only been a week since the news so I’m sure a lot of it is shock though… time for the rescue remedy I think but if you’ve anything you can share that might make me less paranoid I’d love you for it.
Lots of love
Angie
Sorry you have had to wait so long for my reply - I am back at work now so don’t have as much time on my hands as I used to. My sister has been fine since her rads. She was told she might get headaches but she didn’t. The only side effect was her hair loss(again)Like you she reduced her steriods gradually over a period of about 3 weeks strating before she had her rads dand has been off them now for about the same. She didn’t have seizures like you but couldn’t write properly and was getting confused. She doesn’t have the problems now. It must be very difficult and worrying that you may have another seizure but if the rads and steriods have done their trick and you are reducing them slowly you will be ok I am sure.
xx
hiya all got my results of my scan and they have found another two brain mets …also havin really bad pains in my arm and neck …nothing showed on an xray so i go for bone scan next week …also awaiting to see if i can have gamma surgery …really hope so feel like ive had it at the mo sorry to sound so down when there a people worse of thn me but i jus feel a little sorry for myself at the minuite many thanks for listenin love to u all xxxx
Hi Mojomac
I don’t have brain mets (as far as I know… yet…) but just wanted to pop on here to say I read your post and although I have no experience of brain mets, I can imagine that where you are now is very scary. For the moment all I can do is say that I’m crossing my fingers for you re op and treatment. Like everyone with mets, we can’t help but worry about what is happening to us. For now, I hope you can quiet the chatter going on in your head.
Anne xx
Ho Mojomac,
no one can blame you for feeling down just wish there was more we could do to help. I am a liver and bone girl so really sorry I can’t offer any help.
Just wanted you to know we are around to listen and offer support.
Take care.
Love Debsxxx
Hi mojomac
I can see that you are getting lots of support on here from your friends, if you feel it would help to speak to someone in confidence please do call our helpliners who are here to support you through this difficult time. The number to call is 0808 800 6000 weekdays 9-5 and Sat 9-2.
Take care
Lucy
Hi sorry you are feeling down but can understand it completely, especially as they haven’t started treatment…surely it can’t be long now. My sister had rads and at the moment is very well and back to her normal self so when she saw the onc this week he is leaving it for another month before he sees her again (for more scans)and is not planning chemo at this point but he is going to give her letrozole for the other mets in her chest. I am telling you this just so that you know that once they do start treatment there is every liklihood that you will feel better and that there is hope.
I would also imagine that if you are having more pains you will be worrying and very tense which in turn leads to all sorts of pains.
Hope you find out soon what your course of treatment is. XX
Hi
Just wanted to wish you all the best again Mojomac but also to send a message to Angie. I’ve read your posts here and in other places and I’m very sorry to hear of your very recent diagnosis. I just wanted to wish you loads of best wishes too.
Anne xx
Holly. I’ve only just got my broadband back but thanks for sharing with us, it’s really helped me get my fight back (and I really am a fighter).
MojoMac
I know it’s almost impossible but try not to worry about the arm pains. I’ve been getting back pain between my shoulder blades so have been booked in for a bone scan just in case too. If there are any mets they can zap them with radio but I have to say those steroids were causing a lot of leg pain for me (I was on 16mg for a week). What dose are you enduring? They are evil aren’t they but apparently really effective.
I’m off the steroids by a week now, I had to stay on for a week after the radiotherapy to the brain because it takes up to 6 weeks to do it’s thing and my scalp feels like I’ve sunburnt it and is sore and apparently my hair may fall out again but it’s only an inch long since chemo so I don’t care anyway 
Hang in the Hun. And curse those steroids as much as you can, they screw you up.
heya all just had gamma surgey on monday n they seem happy that they got them (all 6 of the little buggers) but they said the cancers qiute active so im going to have a full head radiotherapy and hope tht does the trick …but all is lookin good for now just awaitin bone scan results many thanks for all ur kind words and comments xxxxx
Hi,
really pleased to hear they got the little uggers. Wishing your a speedy recovery and good look with the radio therapy.
Love Debsxxx
Woohoo mojomac. I didn’t know that they can do gamma knife when there’s multiple sites so woohoo for me possibly too.
Great news and on my ma’s birthday. I wish you (but not your cancer) a speedy recovery
Angie