Brain met: Hi unfortunately I had a... - The Roy Castle Lu...

The Roy Castle Lung Cancer Foundation

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Brain met

Hi unfortunately I had a seizure whilst bathing Sunday night, luckily help quickly at hand, got to hospital quickly unluckily I now have a diagnosis of cerebral met ,only one area that is good ,bad news initial treatment was curable intent right upper lobectomy and adjuvant chemo. in March 2015 .High on steroids right now and anticonvulsant meds a plan of treatment is stereotactic radiotherapy or neurosurgery resection .I am obviously concerned about the side effects of that but have no options ,I have to do something just wandering if anyone has passed this way and what sort of side effects this may bring ?Diane.

10 Replies

Diane im so sorry to hear of your condition and my thoughts are with you at this time . Try to remain positive and have hope , im sure other's who have experienced what your going through will reply soon . Diane i send you my best best wishes and hope for a good outcome from treatment .


Hi Diane - I am really sorry to be reading this and hope you are doing okay. I can't comment on the proposed treatment as haven't had that but I do send you all my good wishes and hope that those mets are zapped successfully xxxx

in reply to Janey_H

Thanks for getting back to me ,I am terrified on truth for everyone usual reasons going into the mustard tree today our cancer support centre to get support systems in place.The steroids are holding me up and I just tell my family to continue with their daily lives and all will be well .I plan for the worst but hope for the best .x

Hi my husband recently had stereotactic radiotherapy, he has 4 small tumours, his primary is lung.

Stereotactic is very specific very precise, it's amazing how it works.

They put a brace on your head, after having a contrast dye in and MRI.

Then you have to wait as others there waiting to have their stereotactic, unsure how long you will be, but my hubby was 2.5 hours.

Once he has had the radio Treament the brace is removed... you look like the iron man when you have it on...

But it does work well...

You may lose tiny areas of hair... but it grows back after 1.5 months..

We were expecting big chunks of hair removal, but they are not..

Surgery is offered then you are obviously in a better position then my hubby was, as he could not have surgery...

His hospital said they can control it...

RoyCastleHelpline profile image

Hello diane55, I am very sorry to hear that you have recently been diagnosed with a brain met, this will be understandably be a very worrying time for you. Side effects and treatments offered for Brain mets will vary depending on the size and position of the lesion. I have added a couple of links below which may help to explain some of the treatments which you may be offered and what to expect from them.

If you would like to discuss anything you can call us on our free nurse led telephone helpline on 0800 358 7200

All the best

The Roy Castle Support Team

Hi diane55 - I recently went through a de-bulking of a large brain lesion in my left frontal lobe. This was performed under a brilliant team at Kings Hospital, London. I was then left with some of the core from the lesion plus a small lesion by the left optic nerve. I then underwent the gamma knife (radiostatic therapy) as mentioned above and await a scan result following this in a months time to see if successful. The brain op isn't pleasant as you are so wary of what to expect but you do recover and pick yourself up from it. Gamma knife, again a bit unpleasant having helmet fitted, but much more unintrusive. I wish you all the very best - you will be okay and have a good team around you.

in reply to AWibberley

I hope your doing ok and you have given me some courage to get through this fear is the biggest companion right now ,I am worried that I will lose bits of me after surgery my mad personality. Decisions still pending so just got to wait I don`t even know how big it is yet .I wish you the best also. and thanks for your reply.

Hi Diane55

I had stereotactic in June 2015. i had 8 mg steroids before and after. I had the mask and took mine home. its huge not that i have a big head ha ha.

It felt like having a face mask put on and set. I didn't have a problem with it and was left with loud Tamla music through their speakers whilst I was still for a good hour or longer on my own. I felt ok. I had several small tumours on one side the opposite of the one tumour that was operated and removed. I hate steroids as i eat consistantly on them and not much sleep. I lost a few small patches of hair underneath my hair not really seen and has now regrown. It made my hair weak but mine is fine anyway. In relation to my lung op and one side of stereo I would have the latter. Everyone is different as we say but my bug bear is the steroids. I am awaiting another MRI as my last one showed a slight swelling but that may just be what has been left over from the stereo and not another tumour. It can be helped with....... wait for it.....steroids!

Stay strong and let us know how you find it.

Best wishes


in reply to hedgehoggy

I too am on steroids 8mg twice a day and an anti convulscent, which I hate but hopefully it will reduce the intial swelling I am awaiting a firm plan and advice so just got wait .I do feel very wobboly though relating to my left side .That's new since the seizure ,because of the steroids I will keep following my slimming world diet just deliberately lost weight now likely to plough it back on and I have a long term precancer back problem it helps to be lighter .Good luck Hoggy hope it all goes well for you too with the next brain scan .Diane

Sorry to read about your seizure and brain met, stay positive..... x

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