Does anyone else experience a strange feeling on the back of their head? I am reluctant to write ‘headache’, as it feels like the pain is on my scalp rather than inside my head. It started last time I had my faslodex and Zometa and has been almost constant since.
I guess I want somebody to tell me it is a side effect of the treatments, as you can imagine I am now trying not to fear the worst! and some recent brain mets diagnoses are putting my brain into overdrive:o( It isn’t like a headache more like a prickling on my scalp or a dull throb.
My head felt a bit like this when I had chemo, just before I lost my hair! I hope I wasn’t given the wrong treatment when I last had Zometa!!! :o)
Or does anyone have experience of skull mets that can explain what they feel like, this is actually a possibility, as a know I have cancer at the very top of my neck, so upwards onto the skull is a likely progression I guess.
I am a teacher and have considered head lice, but there is no evidence of these little beasts!
I am waiting for a full body CT scan appointment to be sent through and have a oncologist appt for the 2nd March, so I don’t think it is necessary to phone the hospital. I am just hoping this is something without a sinister explanation.
I don’t have any experience of faslodex, although I am on zometa. I’ve had bone mets since 2002 and at the point it was diagnosed had spread extensively thru my body, including the skull. Not a pretty site when I saw the scans - or perhaps it was pretty! lots of perfect black round holes. Looking back to before the dx I recall very odd sensations in my skull. They were particularly noticeable when I rested my head anywhere - like on my pillow. It was so tender and sore and maybe when not resting I might have described the sensation as a bit prickly.
How long since you have been on bisphosphonates? I found in the first 3 months from dx even though I had started on bisphos. I did have a bit more progression. I think you are right - no need really to contact the hospital and giving yourself a bit more time - it may either resolve or you will have something to be asking them about :(. I do hope it clears up for you and is just one of those things!
I was hoping that you’d see this, as I know you had bone mets in your skull and am I right in thinking that they have ‘healed’ with the treatments over the years?
It may seem strange that I am hoping that this is the explanation, but obviously it is far better than the alternative!! My head doesn’t feel tender it just doesn’t feel right! I’m not even sure prickly is the correct term, there is just a sensation all over the back of my head. It isn’t painful just weird and worrying. I have been having a lot of pains in my neck and legs, I have had an MRI on my back to determine whether the shooting pains in my legs are down to progression in my back and am waiting for a CT scan too.
I also wonder if maybe if I have progression in my neck it could be causing this feeling in my head, in the same way as they are expecting my leg pains to be caused by progression in my back. As I think pain is often felt somewhere is isn’t it?
Thank you again for sharing your experience and also thank you Alison for your message.
Yes you remember right. In bone scans of my head the damage does not show any more. I had to have a brain mri 3 yrs ago and what showed up on that caused a lot of confusion and in the end 2 consultants were looking at the scans and were not sure what they were seeing because my oncologist told them I had not had skull mets. My notes are a huge bundle of papers and of course over the years different oncs see me and would never read through all the notes so she had told them i had not got skull mets! Bless her she was so relieved when I told her that I did have them.
It is quite possible that the strange sensations in your skull are coming from the mets in your neck. I do worry a lot about that - I have bad damage to the odontoid peg that the head turns on so am very wary if I get any odd feelings or pain there. Probably at your appointment on 2nd March if your onc is worried at what you tell him he will arrange an urgent scan for you.
I regularly get funny sensations in my scalp too, sensitivity and ‘pain’. I too went into brain mets overdrive and ended up asking for a CT scan of the brain. At the same time as the scan I also had a few spots above my eye in a line and a funny sensation/numbness up my face to my skull. I felt terrible and assumed the worst. The CT scan was clear. It turned out I had shingles.
I’ve got a section of my skull with bone mets and have zometa every 4 weeks. Other parts of my spine give me pain too and so I think the sensation is generally zometa related.
I guess it’s very easy to assume the worst we’ve all had our fair share of bad news but i’m sure your sensations are not brain mets related. A CT scan will put your mind at rest I’m sure.