Hi All,
I dont post on here very often but would really like to hear if anyone else has mets in skull. I was diagonosed with sec bc in August after waiting for many months for them to do a mri. It was very severe in my neck and we were told that a sharp knock or jerk and my neck would have broken. For this reason everything was done as urgent with no waiting, i had 5 radio therapy session to the neck and spine in diferent areas. Also started zometa and aramidex.
I have had a few problems with feeling so letheragic and nausea in mornings. Saw onc and because of this plus bleeding below done a ct scan. It is not showing any thing in the abdomin but they are referring me to gynacologist as they are not happy about bleeding. The ct of brain is showing mets in skull which they are sure is putting pressure on the brain.
I am having mri on wednesday to check brain more in depth but they have started steriods to try to shrink it and once mri results are through i think i have to go for more radio therapy of the whole skull.
Sorry bit of babble but i could really do with some positive stories if anyone could help.
Love to you all i do read the threads and think you are all so inspirational.
Jenny xx
Hello Jenny, I think the skull is one of those areas most likely to have spread if you have bone mets.
Usually skull mets are treated like bone mets elsewhere. Hope you can find out more once you have your mri results. If your mets are confined to the skull chemo, I think, could be a treatment option.
Good Luck Jenny…Love Belinda…xx
Hi Jenny,
I am one of those with skull mets! - also have it extensively in spine, pelvis, ribs and collarbone. When it was first dx 6 years ago I asked to see the bone scan and was quite amazed. There were large black circles all over my head and I really wondered what would happen. I have been on bisphosphonates for 6 years now, and after a couple of years when I have bone scans now those black circles in my skull dont show up any more!!! so effective was the treatment. Last year I started to get a lot of headaches - but more like my head was sore and hurting than normal headache, and I felt quite sick with it. When I told the onc it rang alarm bells and I went for an immediate MRI scan. They got 2 consultants looking at it because there was obviously a problem but they were puzzled, the onc had said she didnt think I had skull mets because she had looked at the more recent bone scans! I think they were relieved all round when i said it had been quite bad originally because that is what was showing up on the MRI. They thought, like you, that it was probably due to a bit more activity in that area at the time but wanted to wait and see for a while. I was told I could have rads to my skull but I didnt fancy that so said I would rather wait. Well, the headaches have gone so I am keeping fingers crossed.
I hope now that you have started on the zometa you will get some relief. I am on pamidronate and although it took several weeks to have an effect, it has really worked well for me. I also have a bad area in my neck because my odontoid peg (the one that enables you to turn your head) is in a bad way. You do have to be careful don’t you!
If you want to private mail me please do.
Dawnhc
hi dawn and belinda,
Just wanted to thank you both for your posts. Dawn your story is very similar to mine, and to hear you are six years on you have really helped me feel positive again. I have always tried to positive but since Wednesday was beginning to feel a bit down.
Having read your messages has given the boost i needed.
Many thanks to you both and i hope you are both doing ok.
Love
Jenny xxx