Brain Mets

Can anybody give me any hope? I have a freind who has just been dx with brain mets. Can they be treated?

Dear Holly

I am sorry to read about your friend, whilst you await replies from your fellow users, please feel free to call our helpline for support and information from our team. The number to call is 0808 800 6000 weekdays 9-5 and Sat 9-2. BCC have published a factsheet about brain mets which you may wish to read, you can do so via the following link:

breastcancercare.org.uk/docs/secondary_breast_cancer_in_the_brain_0.pdf

Take care Holly
Lucy

Hi Holly. Sorry to hear about your friend. Brain mets are always scary. A lot of people on here have had great success with Whole Brain Radiotherapy to brain mets. I am sure they will write and tell you about their treatment.
Sue

Hi Holly , I to have a friend who has just been diagnosed with brain mets. She was diagnosed with BC exactly the same day as me and we had our op a few days apart , hers was more aggressive BUT she was doing so well. I am afraid for her the outlook is not good but she is going to have Rads, unfortunately she has had a fit and cannot be left alone. Have you had BC??? I am distraught for her but bl?dy scared for myself also.
Love Bobbie

Recently I have been diagnosed with mets in the meningeal layer. There are various types of brain mets, not always ‘brain tumours’ as such. As I understand it, there can also be activity in the skull, which is different again.
I had a test of the spinal fluid which did not show up cancer cells, so the decision for me is to keep on with Xeloda which seems to keep symptoms (nausea, night sweats) at bay. The next line of treatment (for me) would be chemo via lumbar puncture.

I think diagnosis connected with brain is scary, but as with all mets a lot depends on the stage and whether the spread is slow.

Best wishes to your friend…

Thanks for your comments - I have just finished my treatment for BC and was doing well but this has knocked me for 6 …she only just finished treatment for a recurrance in the breast region a few months ago and this has gone. She has had a CT scan but is going to have an MRI and has been told that an op would be the best course of action but not actually whether this is possible. I assume that is what the MRI is being done to determine.
Zotam I followed your thread about your daughter so know that you are still grieving for her and appreciate that you still come on the site to talk to the rest of us. I can only imagine how bad you must still feel …especially at this time of year.
Lottie thanks for your input I hope your treatment continues to work I didn’t realise that there was so many forms of brain mets - I was on Xeloda as I took part in the TACT 2 trials - the lumbar puncture chemo does sound a bit scary.
Corsa I know exactly what you mean as I suppose we all look at others and think will this happen to me?. My friend hasn’t had any fits or anything like that - she just couldn’t remember words occasionally and sometimes had difficulty writing…nothing major. I think that is why it was such a shock as I still have similar things happen since having chemo.
Lottie please keep me updated and Corsa let me know how your friend gets on hopefully both respond to the treatment.
Again many thanks for the replies. XX

i have had brain mets too !! i thought i was on my own … i was lucky my tumuor was op and i have had op on the 31 may 2008 ,it has knocked mefor 6 too, i have had scans on the brain and it shows up none so i dont where it can come back or not…i havehad sickness for about 2 weeks they did more scans but didnt sow up anything bad. so spec said i have come of the steriods to quick (as dont like tables). when back on steriods which stopped sickness and have come of them slowly this time,i have been sick 2 times in one day but after that i havent just felt it smetimes. go back for scans fo other met which is under control on tuesday and get results on 7 jan 2009 …hope its good…
how are you doing at moments?
Hope your friend responds to treatment merry xmas…sophie

Hi Sophie nice to hear from you and that you are doing ok and aren’t so sick at the minute. Where did you have your op? Its an awful thing isn’t it…just when you think you are doing ok. Where else do you have mets and hope that the scans for these do not show up anything bad either.
You are never on your own once you become involved in this site - there is always somebody else in the same boat and ready to discuss things with you…and hopefully helping you feel better. I am doing ok it looks like my mastectomy and chemo have done the trick. and Merry Chritmas to you too x

hi…everyone i’ve just finish my wbrt on november…i reduced my steroids until 0.5mg daily and had to fits…my problem is for my fits the doctor is giving dilantin and i’m having steroid withdrawal syndroms…what should i do,do anyone know the prognosis after brain mets and i’m just 29 yrs old

Dear izzati

I would suggest that you need to speak to your medical team for advice on this one, please also call our helpline for further support on 0808 800 6000 which is open weekdays 9-5 and Saturdays 9-2. The staff here are breast care nurses or have had a breast cancer experience themselves and are there to offer a listening ear and support to you so do use them if you feel it would help.

Take care
Lucy

Hi izzati sorry to hear you aren’t doing too well but hope you rang for advice and feel a bit better. I can’t really help you as it isn’t me who has brain mets (it is my sister) though I have just finished chemo in Oct for primary dx. What I do know is that everyone is different and I don’t believe there is much help in asking for the prognosis as all that you can be given is an average or some guesswork (albeit from what has happened to numerous other people) which isn’t for you personally. I know of people…and there are some who post here who didn’t expect to still be posting but drugs are working for them and they are living with this horrible thing and quite enjoying their lives. I also have read of people with the same good prognosis as I have been given who actually died before their treatment was finished…this disease dosen’t seem to follow set patterns or any structured path…if only it did maybe a cure would be found sooner.
My advice is to get your symptoms under control and enjoy your life as best you can, each day at a time. I really feel for you as 29 is very young and I do realise that no matter what I say it will always be on your mind but hope you can at least find some relief and enjoyment.
lots of love xx

I was diagnosed with brain met last year and was told surgery was not an option so had FBR. I did not have any symptoms and it was found by chance.It knocked the stuffing out of me for a while but I recovered. The tumour shrank and I was delighted. In October I found it had re-grown, still no symptoms. This time I have been offered surgery or gamma knife but as there are no symptoms I can wait and decided. The new thinking is that if the tumour is singular then removal is good, either surgery or gamma knife. I think I will opt for gamma knife as its less debilitating, unless anyone knows better. I also have liver mets with are being treated with ablation. Good luck to you all
Mills

Hi Mills I have looked a lot at treatment for brain mets recently because of my sisters dx and gamma knife seems like a very good option and one my sister may have in the future but because she has lung mets as well the onc wants to try rads and chemo first. It sounds like you have already been through the mill but are still coping very well. I hope that you continue to be well and not suffer any symptoms and are able to make your decision as to what treatment os best for you. x

i had brain surgery 2 and a1/2 years ago. i still think about having sec cancer all the time and feel panicky. i dont let anyone know i feel like this.but every ailment you are terrified it might be the cancer returning. at the moment i am headachy i am due a mri but it will be mid march as i dont see onc until 27 feb. i dont know whether to ring and ask if it could be brought forward. hubby would say just wait you often have headaches they are due to stress. its a horrible situation.

Hi Northern Girl!

It is lovely to see a post from you. I got worried about you a while back as I’d not seen anything from you for a while. Really good to hear from you.

I am feeling headachey at the mo and though I don’t have brain mets (as far as I know - just liver b*****s) you always fear the worst. I have a CT scan tomorrow and results not until the 29th so I am hoping this is all stress-related or some winter viral bug and nothing worse. If you are really worried, I would try and get your MRI brought forward or at least speak to someone at the hospital about your fears.

Take care,

Jenny
x

Hi Northern girl Its good to hear that you are 2 1/2 years down the line from brain mets and are doing ok. I can fully understand what you are saying about every ache and pain being a cause for concern as since my sister was dx with brain mets I have had a permanent headache which is I am sure stress related but still worry about. Its difficult speaking to family about fears as you don’t want to worry them unnecessarily and so you tend to keep it all to yourself dont you? I also worry that I may ignore something which may be more serious, under the misapprehension that it can’t possibly be recurring…even though I know from experience that it can!!! In your position I think I would however ask for the scan to be brought forward, you can’t be too careful and rather put your mind at rest than be stressed for another 6 weeks or so.
xx

I was diagnosed with 3 inoperable brain mets in Feb 2008. Everyone was very worried about me, but steroids & whole brain radiation got it under control, and I continued on a low dose of steroids for several months. Then my inflammatory breast cancer returned, so I was put back on herceptin and then on Xeloda. The IBF has now gone and the brain mets have shrunk a away to nearly nothing, so I’m just on herceptin now (no Xeloda or steroids) and feeling much better.
The cancer will return, sometime, but right now I’m feeling good and I’ve had another year, and who knows how many more to come.
Don’t give up!
Love, Lynn