mum has secondary brain cancer

My wonderful mu has been battling BC since 2005. She had ibc & bc. the ibc was controlled by femara for a couple but then she had a bc tumor to her other breast. in 2010 it had spread to her bones & lung. Today I have found out it has spread to her brain. What is her life expectancy? or of some alternative treatment. thanks

Hi hazy1975
I’m sorry to hear that your Mum’s BC has now spread to her brain. There have been a few ladies on here who have had treatment for this, usually whole brain radiotherapy, so you may get some answers later on. Unfortunately I can’t help yo with this but I’m wishing you and your Mum all the best.
Nicky

i also have just found out today that i have brain cancer …i am in bits… im so muddled …i dont know wot to ask …can anyone put some good news for me on here…please…i start rads next week and chemo in 3 weeks

Hi tracy

Sorry to hear of your diagnosis, I’m sure others will be along to share their experiences soon.

In the meantime, here’s the link to our factsheet which you might find answers some of your questions:

www2.breastcancercare.org.uk/publications/secondary-breast-cancer/secondary-breast-cancer-brain-bcc56

Also, if you need to talk to someone or discuss your diagnosis, do give the Helpline a call, they’re excellent listeners.

0808 800 6000

Best wishes

Louise
Facilitator

Oh tracy and hazy
I’m so sorry that you have both had this scary news.  
I am sorry as well that I can’t make it all go away.  
All I can say is that I was diagnosed with brain mets in May 2011.  I had radiotherapy and at the moment they seem to be under control  - I don’t want to sound too positive as I have an MRI scan on my head in 2 weeks time and I don’t want to jinx it!
So I am almost 1 year post brain mets diagnosis and so far I seem to be ok.
Hazy - I also have tumours in my lungs and bones (+ liver for me) the brain mets have been treated separately most of the time, although your mums onc may suggest capecitabine after her radiotherapy.  It is a tablet chemo which is thought to cross the blood brain barrier
Tracy - I know this is such a difficult time, I always said ‘my worst nightmare is if it goes to my brain’ but I am still the same person - just as rubbish at crosswords as I always was, and still laugh at my kids terrible jokes :slight_smile:  I have found it gets easier to deal with.  
I hope treatment goes ok
Big hugs
Melissa x

thank you so much tilly you are wot i needed …positive feed back…
do/did you drive? can you drive again if you have this??i have to move house as i live out in the stix and car is essential:(
i start rads next week…followed by chemo(think i have said this)
i also have it in my bones and on meds for that…i am a person that never took headache pills to a pill popping fanatic…
i have 4 children and a single parent this is the bit that is petrifing me…but your message has given me a little kick up the arse…xx
tracy…xx
think ill get house work done now i cant go out…zzzzzz

Hi Tracy 
I haven’t driven since diagnosis,  the hospital suggested that I surrendered my license as apparently that’s better than having the dvla take it away, not sure how because it’s the same end result, but I think it may have something to do with how they look at your case when you ask for it back.  I was told that the typical ban for brain mets is 2 years but that I can apply to be considered for getting it back after 6 months.  My hospital suggested waiting until one year as they thought I might have more luck then.  I need to be able to demonstrate no seizures, no need for anti seizure medication and no tumour progression (which is why the MRI next month is so important)
When I first stopped driving it was a nightmare, relying on taxis and lifts from friends for all my kids activities was awful (I’m pretty isolated too). After about 3 months when I was having a moan a mum at the school suggested that I contact a dad of another child, he had recently been made redundant.  He lives locally and comes round when I need him to take me too and from places.  I pay him £10 an hour and he uses my car.  he is a lovely chap and it has made my life, and the kids,  seem almost normal again.
The brain mets diagnosis meant that I was able to claim the higher level is disability allowance (the Macmillan nurse helped me fill in the forms). I use this money to help pay him.  I have also used the money to get my car which  is through the motability scheme.  It includes him on the insurance along with all servicing, insurance premiums, road tax etc.  it’s a good deal.
I know not being able to drive can seem like a nightmare but there are ways round it, I probably should have been willing to accept more help but actually finding someone nearby that can drive me around for not too much money has been a real boon.  It might be worthwhile asking at your kids school or failing that there are lots if students who finish for their long summer break soon.  The other place that might be helpful is your local church often has a list of volunteer drivers who help get people to and from hospitals etc, maybe they could suggest someone who could do a bit extra for you.
Sorry to have rambled, hope some of it helps
Love mx

tilly again that was a huge help…my eldest is doing lessons at the mo so gonna look into adding her to my insurance just dont know if i can instruct her if my licence is handed in if ya know wot i mean…
my nurse rang me today and i was able to go through wot i didnt really take in yesterday and told her about you and she was pleased i have found someone with a good out look …she also told me that my lump/tumour/bastard thing is very small and at the base of brain so i am hoping that rads will really zap it and that i hopefully will be able to drive…
did you/have you had any seizures? hope not… my daughter has epilepsy so aware what they are like and all kids are clued into what to do if she has one so that is handy…:
what chemo treatment did you have …they are considering 2 different ones at the mo depending on me bloods…1 is everyweek for 6 or 6 once every 3 weeks i would prefere the shorter one to be honest but i cant choose…
hope to read you soon…and i also apologise for the ramble…xx

Hi Tracy

Have sent you a pm

thank you for the link it has been helpful…xx
can i ask the ladies on here how long they have been diagnosed with there secondary brain cancer …i have seem to be getting very little positive from my nurse and i thought she was ment to help i have gone from feeling ok today to feeling like dirt…positives please…xx
all the breast
tracy…xx

i had a tumour removed by surgery in aug 2006 but at the minute suffering badly from anxiety
cannot stop thinking the brain mets will come back. all the symtoms are the same and the consultants say it is
anxiety. i was put on a tablet called sertraline but have been even worst. i am seeing the doctor on wed and i am
goint to suggest a scan, i think it is the only thing that will settle me.

Hi northerngirl,
Sorry to hear you’re feeling like this. If you need a good listening ear then the helpline team are here for you, do give them a call. 0808 800 6000, no charge for call.
Take care,
Jo, Facilitator

Hi northern girl
I am so sorry that you are having to go through all this- I’m not surprised you’re stressed about the brain mets coming back. Quite honestly I would think that you were odd if you weren’t stressed!
I think it makes sense to ask for a scan, it is the only way of finding out for sure what’s going on. I am sure that your onc will understand and agree to you having one. I’m not suggesting that you lie to him/her but I certainly know of ladies who have put extra emphasis (exaggerated?) certain symptoms to make absolutely sure that they do get booked in for a scan ASAP. I hope that you get good news when it’s done and that you can relax a bit.
Hi Tracy - I am so sorry for not getting back to you. I have been struggling with the new forum and lost this thread- finally found it this evening. I hope you are having better luck with it than me.
I was diagnosed a year ago. Other women have been around for longer - northern girl may be having a tough time at the moment but I find it really cheering to see that her brain met was found on 2006 so 6 years ago!
Btw my MRI scan went well, everything healing up nicely, I’m having a pet scan in 5 weeks to check for cancer activity. Think I will wait til the results if that one come back before I reapply for my licence. It does feel a bit like I’m always waiting for the next results - not sure why I keep delaying, I think I’m scared they will say 'no, and don’t bother to ask again until 2013!!
Take care
Melissa

Ps hazy 1975 how is you mum?
And Tracy, didn’t ask but - how are you?