Just wondering if anyone can give me an idea of what would be symptoms of brain mets.Am hoping I’m worrying about nothing but have had quite a few things over the last few months which have started to worry me.Been having a wonderful travel and fun-filled summer and just come back and now exhausted after just 2 days back at work.
I have a small swelling on my eye,(having had at least 7 or 8 previous small stye-like things since last November)which the optician today wasn’t sure about but thought it probably was ok.
My balance has deteriorated over the last couple of months. I had a nasty "vertigo-like"attack which started with a weird pain at the back of my head a fortnight ago at a theatre (after never previously having a problem with heights)which was followed by headache,sickness and diarrhoea the next day.I generally feel very giddy and unbalanced on stairs and have to hang on to rails. I seem to be clumsy and am forever dropping things. I fell getting out of a car the other day when I had nothing to hold onto.My short-term memory and concentration which has definitely been getting worse since on chemo last year and maybe with arimidex but is getting beyond a joke now. Every day I seem to do several stupid things - I nearly walked out of a shop with someone else’s purchases today - I’ve lost a birthday card and a royal mail package slip today somewhere round the house but can’t find them for the life of me!!I just completely blank out even when I’m holding things and get confused. I’ve noticed my typing on the computer has really deteriorated over the last few weeks and spelling of simple words defeats me sometimes having always been a good speller.
I haven’t noticed frequent headaches but I do get bad tension headaches after stress - it’s mostly the lack of balance and poor memory and concentration and the eye swelling that concerns me. I hope that someone’s going to tell me to pull myself together and that I’ve got nothing to worry about.My consultant was supposed to be ringing me to discuss my worries today but didn’t so I just thought I’d see if anyone had any ideas and whether it could be brain mets without major headaches.
I’m on my own so am worried sick about not noticing something as have no-one at home to assess my day-to day behaviour. I’ve just been so exhausted after 2 days back at school and maybe it’s all just tiredness and stress. I’ve got my next PETscan at the end of October. At the same time as wanting to know if something is wrong I’m afraid to open a can of worms as not being able to drive would feel catastrophic being on my own in a small village.
Any wisdom greatly appreciated. Have been keeping so well this year (had my 3rd consecutive NED scan in May)and have been socialising and travelling like a whirling dervish since April and just scared it’s all going to come crashing down again.
My mets in lymphatic system and lungs were diagnosed in Feb 08.
Take care all,
Anne x
I am sorry nobody has replied Anne. I know it is a worry that all of us have.
Have things checked out, could be nothing could be something!! Your onc will probably advise bringing your scan forward, just as a precaution.
However, I do know about memory problems. I used to be a teacher but the stress of it got so bad I had to give up. I am not saying that that is the best option for you!! I similarly could not remember names, how to spell etc.
However it was the stress of it that was problematic. I could teach but got so annoyed with myself when I could not remember the kids names, where their books where, where my planning was, that became too much.
I had many years of therapy, mainly around that loss of cognitive function. My onc said that it is increasingly becoming a problem, a lot of women revert to normal after about 2 years, but some dont.
In her experience it is women that are in jobs like teachers, lawyers, that have the most problems. They are more aware daily, of the limits of their cognitive function.
Therapy taught me that the more you are conscious of memory issues, the worse they become. This leads to stress, which has an impact on the memory. It is a vicious circle.
As you can see, I cannot write coherently either, but I hope you get the gist of what I am saying…
Also, post holiday blues can be significant. Back to the routine and more time to think!!!
Julie
Thanks so much Julie. Your words make so much sense. I will get it checked out for peace of mind. You’re right that it’s a vicious circle as you get frustrated the more you’re aware of things. It’s more accentuated being on my own as I feel the strain of the whole responsibility of looking after myself and the house and dealing with everything. I have wonderful friends but they can’t be with me all the time.
I only work part-time but I’ve taken on another 5 hours at work this term and have been feeling that this might be a mistake. I’ve been feeling mostly pretty good through the summer holidays when I only did a very few hours of teaching in the 8 weeks.
Then when you get the idea of possible brain mets in your head it’s so scary but worth getting checked out for peace of mind.
Hope you are doing ok.
Anne x
hi
I would either go to the gp’s or the hos the will see to you. I banged my head and was told it was concussion but I few weeks later ended up in hospital and told it was brain mets.
I actually phoned the NHS line and they told me to go straight to the hos I had just come back from holiday and thought it was a migraine i was having.
I know yours aren’t the same symptons though my balance was off but i didn’t know that before i went in hos, but it will put your mind at rest to sort it out.
My breast nurse tells me to ring her if anything is wrong or i need any questions answering, but i don’t like pestering and there lies the problem with a lot of us
hope you get it sorted and with good results for you.
lots of love
lynn
Anne, I’ve sent you a PM
xx
Hi Anne,
I’m very sorry to read your post and hear the symptoms you are describing. It must be very distressing for you, and the thought of it possibly being brain mets must be absolutely crushing especially since having NED for some time now.
I’m afraid I can’t offer you any advice, only to tell you of my experience. I was diagnosed with 1 brain met in my peripheral lobe (area which affects memory) in March this year. It was picked up on a routine scan, and I had no symptoms.
I have since had 2 weeks of radiotherapy to the tumour and a recent scan showed it had shrunk.
I have still not experienced any symptoms as a result of the brain met, and other than having chemo for other tumours in my neck and chest, I have felt well since.
I was hesitant to reply to your post as I realise this is not going to be reassuring for you, but I just wanted to let you know that I’m here and I understand how afraid you must feel and wanted to send you my love and best wishes. I only hope you can speak to your onc soon and find out for certain if it is brain mets or not. Then at least he can come up with a plan for treatment ( I always feel better when theres a plan).
Please let me know how you get on.
Sending you a big hug
Bex
Hi Anne,
I think you sound as if you have come to a decision. I find the thought of brain mets so terrifying, having gone through the buildup and the rushed mri and then hanging around to know if it was o.k. or not. The quiet room (spoken of in hushed tones) only leads to one conclusion, but it wasn’t that way for me - all was o.k., and I hope that is so for you as well. Delaying anything just leaves us getting more and more anxious once that seed is sown so I hope there will be answers for you soon, and that all will be well.
Dawn
xx
Thanks so much for all the replies and kind words!I’ve calmed down a bit today but am still yet to hear back from my consultant. I’ve got an appointment with my GP in the morning so I’ll talk it through with him and then ring my consultant’s secretary again and try to get something in place. I go from panic to thinking I’m probably adding things up and coming to 25 and over-reacting but I know my “chemo brain” has definitely getting worse and I can’t think of the simplest of words and get mixed up - just feel like I’m 90 at times and yet just 39!
Anyway as you all say it’s best to get it checked out and ruled out so hopefully I might get somewhere tomorrow.
Thanks for listening and take care all.
Anne xx
Anne
Couldn’t you get your GP to ring the consultant while you are there? I would make a nuisance of myself to get heard.
I have only just been diagnosed with bc and really don’t know the extent of anything yet, but my memory is dreadful, my typing has deteriorated and I keep making mistakes. I put it down to stress, having to stop HRT and not sleeping too well. It could be anything.
Do hope it is all ok.
Ann xx
Hi Anne,
I have only just seen this post so forgive me for the late reply.
Just get your consultant to sort it out I am sure it will be nothing more than you over doing it on the having a good time front. Well that is my wish for you.
I was never afraid of heights but last year when we went to Truro theatre and a lady sent me up too many stairs I felt dizzy and thought I would pass out. When I mentioned this in chemo a few of the women said they had a problem with balance since chemo. Add all the stress over the past couple of years, your divorce etc who can blame you for being a bit forgetful.
Sending loads of love to you.
Love Debsxxx
Ann and Debs, Thanks so much for your words! How do you manage to say the right thing when you’re having such a tough time yourself and you’re probably right - it’ll turn out to be just stress and chemo brain and I’ll feel a right drama queen but we all know how scary it all is and how often we feel left alone to notice symptoms on our own.
Anyway I finally managed to speak to my onc. on the phone this morning (2 days after ringing)and he actually took it more seriously than I was expecting (thought he’d fob me off)and will organise an MRI hopefully for next week and then we can know for sure.
Not had one before - can anyone tell me what to expect?
Trying not to worry now - at least it will put my mind at rest one way or another - it’s always best when you have concrete information even if it’s bad news.
Have not really told anyone about my fears as don’t want to worry people unduly but it’s tough having these worries on your own. Don’t seem to have a BCN anymore - been told the funding’s been cut and to speak to my consultant with any worries but he’s so busy.
Anyway off to the GP now - I think I need to go back on the anti-depressants. Really hope I feel upbeat again soon!
Anne
I had an MRI scan on my breasts, which is obviously different because I had to lie on my front. It doesn’t hurt at all but is pretty noisy and you have to keep still. The scanner works in bursts of varying length, during which time it is very loud. I was concerned that my breathing would mess up the images and tried to hold my breath for a while but some of the bursts are quite long and I had to breathe in the end!
They gave me headphones and piped music through them but to be honest, whilst the machine was working, I couldn’t hear it. They sit in another room next door, but can talk to you through the headphones. They gave me a panic button for if I wanted them to stop but I didn’t need to use it.
You have to leave all metal objects outside and I had to fill in a questionnaire beforehand, asking if I had any metal bits in my body or if I had had certain operations.
I had to have some dye injected during the process but I don’t know whether you will. It all lasted about 20-30 minutes but it obviously depends what they are doing.
I had a look at some Google images of an MRI scanner before I went because I wanted to know what to expect. It is like a tunnel and you lie on a moveable platform. Depending which part of the body they are scanning, they move you into the machine the relevant amount.
I am glad they are taking notice of you and do so hope you are worrying for nothing. When is the appointment? Do let us know how you get on.
Ann xx
Anne, good luck today at G.P. I forgot you had been o antidepressants maybe it coiuld be related to that. Ian’s sister was on them felt better and took herself off them went downhill very quickly and it took a while for them to kick in again she really suffered. She is back on them now and we have told her not to self medicate if she is feeling good it is because they are supplimenting the chemical inbalance so to stay on them!
I had a brain scan a couple of years ago because I was feeling muddled, results were fine, thank God. Scan is a bit weird but needs must. If you have to have one I will post and tell you what to expect or I could chat on the phone. Don’t want to put people off. Only joking!
Take care and I am sorry I wont be able to make Bristol on Tuesday with luck I will make the next one.
Love Debsxxx
Hi Anne, I have had MRI scans a few times. It is totally painless. I agree it can be a bit noisy but they can give you earphones…the music was crap! My biggest fear was clostrophobia as I dislike being enclosed. But when I had my last one earlier this year I just kept my eyes shut the whole time. ALSO VERY IMPORTANT…if yu do feel worried about the MRI, ask your GP or hospital to give you a tablet to help. I got one tablet to take the evening before scan and another to take a half hour before I went in for scan. As I have had scans before I didn’t need one the night before to get me off to sleep to stop me worrying. But the one before the scan REALLY helped and just made me relax. I lay on my back each time and had full body scan. Think it took 20 minutes. (Sometimes they inject you with something first but they don’t always do that). Hope this helps and doesn’t make you worry even more. Love Val ( Scottishlass)
Hi Anne,
I hope the visit with the GP goes ok for you. I have had an mri brain scan and also quite a number of other mri scans. I do think for those with claustrophobia it is hard because the tunnel is quite narrow. I always say to people when you go into the scanner room take a good look at the tunnel and through it. It helps to notice that it is completely open at both ends. It is not dark when you are in there - well lit :). I seem to remember some sort of restraint thing round my head to make sure I didn’t move, but it wasn’t unpleasant. I don’t recall needing a dye injection. All the other info above is spot on. I hope they get it organised soon for you cos I think you really need reassurance asap.
Dawn
xx
Thankyou so much for all your comments. It all helps tremendously and especially with what to expect with the MRI. I’m feeling more positive now and of course now feel like it might be all in my mind but at least I’ll know for sure one way or another and just hope it’s down to stress and chemo brain!
I got on fine with the GP. He’s put me back on antidepressants but a new one,Citalopram as I had bad side-effects from the one I was on previously.He didn’t say much about my symptoms once I’d said I was having an MRI. I always think he gets a bit scared when he sees me and usually just refers me to my consultant but is very sympathetic and I was surprised that even the receptionist knows me by name now!
Just got to wait for the MRI now - apparently done on Mondays so I guess the earliest will be a week on Monday now.
Done some frivilous purchasing today to cheer myself up - a new bag, skirt and blouse and not actually done anything stupid today yet as far as I remember!!
Have a good weekend all and thans so much for your support xx