Hi all. Just in shock as been in A&E all day as had some head pain and also a numb chin and jaw. Had CT scan and it’s showing lesions on my skull and jaw. I’m in total shock and scared stiff. I was diagnosed with bone mets 2 years ago. On palbociclib, letrozole and denosumab monthly. Had mri 3 months ago due to wierd headaches and told it was clear. No one at my cancer hospital seemed concerned with my symptoms recently and told me if I was worried to go to A&E! So scared what the future holds for me now.
I am sorry to read your note and that you feel scared.
Would it help to speak to one of our friendly nurses on our helpline? You can reach us on freephone 0808 800 6000 (Mon-Fri, 9am-4pm; Sat, 9am-1pm). We’re always here to chat things through at your pace.
If you prefer, you can even leave a message for our nurses right on this Forum, in our Ask Our Nurses board.
I don’t want to give you false hope as you may have a different type of breast cancer to my mum and/or react differently to treatment.
However, when my mum got diagnosed with extensive “pepper pot” mets Sept last year, we was told they were also in her skull. Well… my first thoughts were the worst!!! I was besides myself.
But… the oncologist told my mum that they do not go from your skull to your brain. If you get brain mets they get there through travelling through your blood stream and not via your bones. He said, for the majority of women skull mets don’t really cause much issues or concerns. They are just there. He was more concerned with her spine and pelvis area as these can hinder mobility in future.
There was another lady on the bone mets forum called Dawn a long long while back who has sadly passed away since, but she lived with bones mets for 15years(ish) and she stated she was diagnosed with extensive bone mets (including the skull) from the onset. This really gave me great comfort. From what I gather from her posts, she never had an issue with them.
Obviously not every situation is the same, so speak to your oncologist and see what they say.
Sending you loads of love! Xxx