Hi everyone,
I’m just out of hospital having had brain lesions discovered following seizures earlier this week. I already knew I had stage 4 breast cancer with mets to ribs and lungs. I was diagnosed in May last year with lung mets after a persistent cough but somehow the brain and bone mets were missed and discovered only in the last week. I’m not sure if they’re new as I think they may have been missed on my ct scans and only spotted on the mri and bone scans I’ve had very recently. Things have been terrifying enough already but I am now beside myself with worry about the future. I’m seeing my oncologist on Thursday next week and hopefully will have a course of radiotherapy for my brain mets. It would be great if anyone with a similar diagnosis has had a positive outcome they can tell me about, just any words of hope really would be much appreciated. I have tried to readjust to the new normal last year but this just feels like immeasurable hell following on from what has already been a horrendous time and really hope someone out there can offer some hope. Thank you. Xx
Hi Annette,
It’s wonderful to hear you are still here after all this time although I’m sorry you’ve been through all this. Thanks so much for replying and you are right being in limbo is awful and takes me back to when I was first diagnosed. I used to be fit and healthy for my age and it was bad enough knowing cancer was in my lungs and ribs but brain mets sound so awful. I wish I could fast forward to Thursday and then to starting treatment again as I feel so restless and scared. Wonderful to hear your trail drug was so successful and long may that continue! I’ll update on how I get on on Thursday xx
I'm not in the same position, 'just' stage 4 breast CA with bone mets and investigation for a lung nodule. I know my brain hasn't been checked as I have no brain symptoms. Not sure if your hospital is the same or if they had previously checked?
Try not to give in to the fear. It might not be worst case scenario. I know this is terrifying, but there are treatments and ways to stablise things. I really just want to give you a huge hug. Hopefully you'll know more soon after onc appt and you can slowly adjust again to this new place you find yourself in.
Sending all the good wishes
xx
Hi Boxoffrogs,
Thanks for your kind message and I am sending you a huge virtual hug. It’s so hard not to be terrified after the shock of my seizures, it feels like my cancer is everywhere. The only symptom I had was temporary deafness and feeling like my head was in a water tank every so often which didn’t come up in any of my searches of brain mets. Even saying the word terrifies me. You are right though there will hopefully be treatments and the worst bit is at the moment while I still wait for a plan. I hope your investigations go well too. I feel unsteady on my feet following my seizures and I used to be so fit and healthy. Now I’m on crutches which is such a new experience for me but hopefully that won’t be for long. Sending many good wishes to you too xx
I feel you, I have a walking stick for bad days now and even 6 months ago I was able to run after my 5yo goddaughter! It's hard accepting such visible aids, but if it helps me do more then I try and focus on it increasing my independence from where it would be otherwise. I hope your walking keeps on improving xx
Thank you, I will let you know how things go. Everything crossed for us both xx
Hi Ellie,
thanks so much for checking up on me :) My oncologist confirmed today that I’ll have a course of radiotherapy for my brain mets although I’m not sure when it will start or how long it will be as it’s organised by another department. My cancer nurse will chase it up next week though if I haven’t heard anything by then. I’m very anxious for it to start as soon as possible and remain very scared. It sounds like it will be for the whole brain as mets quite extensive. My nurse also said most people tend to be more scared of cancer in the brain than anywhere else but that it’s still treatable, I really hope so! The only bit of positive news is they think my recently discovered bone mets have pretty much already healed as a consequence of the medication I was already on, I need to take any bit of good news where I find it! I’m finding it mentally really difficult to come to terms with cancer being in my brain, especially as I was rushed to hospital with seizures which I have no memory of. I used to be so fit for my age and today I was hobbling around hospital on crutches. That said, I couldn’t walk at first following my seizures so fingers crossed I will get stronger. Life can really change at the drop of a hat can’t it! I really hope radiotherapy works for me xx
Hi I hope it does as well, trust your oncologist, that is their job.
I have had the same one since i was diagnosed, never ever seen a different one, we re on real good terms now.
The waiting is the hardest part, of this journey and that is what I call it.
I cannot stop you from being anxious, wish I could, you are human and we all deal with it in our own way.
Hi LovedbyArchiedog, and thank you for your update, and it's good to know they have a plan for you, and your nurse is right about people's perceptions of cancer in the brain, it's as treatable as most other Cancers, and that your bone mets have healed is very good news, and we all mourn the things we were able to do, its normal, but not good for you, focus on what you can do, and if possible how to improve on it, as Ellie said, we must all find a way to deal with our emotions, keeping busy works for me, and not giving in to this awful disease, my very best wishes for your radiotherapy my friend.
Eddie xx
Thanks Eddie,
I really want to start as soon as possible now so hopefully it won’t be long. Keeping busy is good advice and I am missing Archie dog who is staying with my in laws so looking forward to having him back soon. I’ve found myself flipping between fearing the worst scenario and hoping I’ve a reasonable amount of time left but I hope it’s the latter as I don’t want to go yet! Xx
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