Rads for skull mets?

Hi - I will have to make choices tomorrow  Has anyone had rads for skull mets - what was it like.  Are they able to localise and how long did the SE go on for?  .

 

Experiences appreciated for informed decisions.

Cheers Jacquix

Hi Jacqui

I am sorry I cant help you because whilst I have widesoread bone mets I am not aware that they are in my skull but I do hope that somebody comes along soon with their experiences to help you make an informed decision. Take care x

Hi Swanie. I have skull mets as well. They found them when I had bone scan over a year ago. Since then I have had 2 CT scans but only for thorax area and pelvis/spine. It does concern me a bit that they don’t check them, but the ONC told me that since the letrozole and zometa are ‘holding’ the rest of my bone mets they assume that they are ‘holding’ the scull mets as well…
I try to be reassured by that…I do get headaches which are a bit of a worry but ‘they’ tell me that they are probably ‘pressure’ headaches.?!
Have they suggested radiotherapy … Or is it something that you are researching personally?

Sorry I can’t help with YOUR question…

Hi Jacqui

 

Sorry to be replying a bit late as you have probably made your decision now. I was dx with extensive bone mets back in 2002 and they let me see the bone scan plates, one taken initially and one a year later. The first one showed also that I had loads of them on my skull - lots of very neat large black circles. On the later scan not one of them on my skull was still to be seen!!! Then back in about 2006 I had been getting a lot of headaches so the onc decided to do a brain mri. It caused quite a bit of discussion between those reading the scans as they were seeing something on the scan that they were having difficulty identifying. The onc called me in (I had been told to hang around the hospital with a bleeper) and said to me " you didn’t have bone mets in your skull did you?" Because my history with bc is very long, and the file huge she hadn’t looked back far enough and only seen the scan that taken after the mets had ‘disappeared’ off the scans. I think there was relief all round when I said I had indeed had them in my skull!

 

The did offer me rads for the headaches but at that point I chose not to - but wait and see - and sure enough the headaches stopped. I haven’t had any bother since. I hope you have been able to come to a decision you are comfortable with.

 

Dawn

xx