Breast cancer first diagnosed 3 years ago ER positive her negative - mastectomy done - Now MRI scan showing in cancer brain membrane and spine and liver. Had radiotherapy mobility still fine but can't use both eyes now - one at a time is fine. If I google Leptomeningeal metastases I am dead soon. I am 58 years old was hoping to make it to retirement.
On treatment - anyone with a similar condition and still alive and kicking would boost sprits many thanks.
Hello Beatson786
My cancer was different to yours so I hope that it is ok to reply to you. I am one of the Community Champions and noticed that you had not yet had a response to your post. Sometimes it can take a few days for someone who has a similar diagnosis to see your post and respond.
I am sorry to hear that you have had a diagnosis of leptomeningeal metastases and I can understand how scary it must feel.
Google can be a scary place to go but it is natural to want to have more information. I think the thing to remember as well is that it is not necessarily accurate and does not have the full picture regarding your own diagnosis/medical history. I know that when I had my diagnosis I did google to start with and the information that I found didn't reflect my experiences in the end.
I have had a look and found some information around treatment that may be offered and will pop a link in case this is something that you want to talk to your doctors about. I found myself that having a bit of information helped.
Treatment for leptomeningeal metastases | Cancer Research UK
We do have a Support Line and if you feel like talking to someone about your diagnosis would help, then please do give it a call. I have found they are lovely on there and sometimes it just helps to chat. They are there from 8am-8pm daily.
Hopefully someone who has had a similar diagnosis will come along soon and offer some more specific support but in the meantime we are here if you need us.
Jane
