stereotactic Radiosurgery

Hi, I had cyberknife aka stereotactic radiosurgery  in 2013 for a secondary brain tumour ( primary was kidney cancer in 2005). I had 3 x 20 min sessions in 3 days. It is now inactive tho I have to take a v small dose of daily  steroids.

I've been monitored by MRI scans every 3 to 4 months since. Have not had any symptoms like u describe. In fact, had I not been monitored regularly post original surgery, I'd not have known I had a brain tumour, especially as I get migraines, so just assumed my headaches were those. Turned out not! Of course it depends where the tumour is as to what effect it has.

How long off is your scan? Can u get it n your clinic appointment brought forward? Do u have a cancer nurse specialist who can support u n push for earlier appointments?

Sorry for all the questions and odd spacings in this post.

Good luck. Am rooting for u x

Thanks for the reply,

I called the breast care nurse today and after speaking to the oncologist they have put me on dexamethasone 4 mg for a week and then 2 mg for 2 weeks until my scan. I think this is to help alleviate symptoms until they can see what’s going on. I am hopeful this will help but also was trying to avoid steroids as worried about side effects, particularly weight gain - have you had any difficulties with steroids ?

Yes unfortunately I've gained quite a lot of weight n have the " moon face" too. I'm only on 0. 5mg dexamethasone daily n have tried to come off them twice, to no avail.

But I  have been on them for 6 years now n only have one kidney so am not producing enough of my own corticosteroids. Your situation sounds quite different to mine.  

My mum is same. She has radiosurgery to one brain met last August. They said the symptoms of eye pain, pressure, numb nose and face would not go the aim was to stop the tumour growth. They said the nerve damage causing the symptoms would be permanent which it was. If you are unsure be pushy and insist on a new scan do not let them make you wait just to be sure amd put your mind at rest. All the best.

Thanks for that, good to know I am not the only one. I was told the aim was to stop growth and the SRS may not shrink the tumour. However I think oncologist was hoping the pressure would reduce. I have been on steroids since Tuesday now and they don’t seem to be having much impact apart from preventing sleep!

Scan is only 2weeks away now and they have promised to rush through results. How is you mum now ?

Can u take your steroids after breakfast then there's less chance of them preventing sleep? They take a while to kick in but also wean off. Good luck with scan n results.

How r u getting in with steroids now? Still not sleeping?

I have been taking the steroids in the morning. Some nights I do get a good sleep but at the moment quite wakeful, sleeping for no more than 2 hours at a time. I use some mindfulness and meditation apps which help. I do think the restfulness might be to do with worry about my mri on Friday and then the results. 

I am playing all sorts of scenarios in my head at the moment. The feeling of pressure beyond my eyes has lessened but then that will be the steroids and not tumour being inactive. Numbness and paralysis in right side of my face the same and for the past few weeks I have permanent tinnitus in my left ear which makes me think more mets have popped up !!!! 

Just anxious to know now so can face what comes up next and hoping there would be further treatment available.

Hard to smile and keep going some days but the beautiful weather helps, I feel so much better when I can get outside.

Do post when u get your MRI results on Fri.

Will think of u in between then n now. I've got to wait till 9/7 for my results, but then they r from my routine  CT n MRI  scans. Doesn't stop me fretting tho lol.

Some of your wakefulness could simply b the weather- it's been so muggy n then the sun rises about 4 .15. I know coz I've been awake then!

Make the most of getting outside x

Keep hydrated too with this weather.

I was wide awake on the steroids so I was given sleeping pills which helped.

Hope you both have good results, mine are tomorrow.