Diagnosis with brain mets

Hi Girls

I am hoping one of you lovely ladies can help. I am one year down the line and have been going throught BC with a good friend who is 18 months post diagnosis. Yesterday she was diagnosis with brain mets. Mega shock to everyone even the doctors. She had presented with headaches only which they thought were due to Heceptin but they did a scan just for reassurance. She has multiple mets and two areas that have caused swelling. They have started her on steriods and she is due to start 5 doses of radiotherapy tomorrow. They have acted very quick. She does not use the forums and I said I would post for some pearls of wisdom. Are there any other treatments. She is her2 receptive, hormone neg. They have not discussed prognosis but are going to repeat her liver/lung/bone scans. She had a PET scan is Jan 07 that was clear. I am at a loss as to how to support her and so so scared.

love Geraldine

Hi Geraldine
I understand how terrifying it can be to have brain mets. I was diagnosed with them last June. I too had multiple mets and had 10 sessions of radiotherapy.
I think the thought of them being in your brain is horrid and I was so terrified it would all change me, or make me stupid, or unable to talk etc or function normally. Please, let me reassure you that I have come through it virtually unscathed (!) and continue to live to tell the tale.
The radiotherapy was ok, but I felt very weary and weepy and just exhausted for a good 3 months afterwards. I was glad to come off the steroids and it did affect my appetite for a while but lost 4 stone I needed to so worked out well! Rather severe way to diet though…
I am now on Capecitabine, an oral chemotherapy that does cross into the brain and is certainly keeping all my mets (bone,liver and brain) at bay and nothing was visible on my recent scans.
So, reassure your friend and just be there, do whatever you can to help and give her hope from me.
Perhaps the hardest thing a year on for me is the fact that I’m not allowed to drive. Not sure whether this is forever , no-one seems to know but it is hard. Now good at walking, bought a bike and I get a free bus pass as medically unfit to drive,and I have good friends who drive me!
If theres is anything specific you want to ask, please do or you can pm me if your prefer. There are a few of us brain mets around but not many, its doesn’t seem to occur too much.
Take care
Love Kitkat

I read this very interesting article about brain mets treatments on another site. Here is the link if anyone would like to read it.


Thank you to both of you for responding. I will look at the article after I having finished posting, thanks Jenny. A big thank you to you kitkat. I spoke to my friend briefly this morning before she went off for her planning meeting and first radio. I think your post help lift her mood. I have tried PM but had no luck. Would you mind if I ask some more questions.

Are you hormone or her2 receptive, she has been told she will not have more chemo?

Did you loss your hair with the radio and if so did it grow back?

Why are you not allow to drive?

How long were you on the steriods for?

Hope you don’t mine me asking all these questions.

Love Geraldine

Where your other mets diagnisos at the same time?

Hi Geraldine
So pleased your friend felt a bit more positive.
Answers to questions:
I’m hormone positive and was on aromatase inhibitors (exemestane) but as these obviously weren’t working I came off them. I’m HER2 negative so can’t help on that one although lots of ladies here are and get herceptin.

I’m afraid I did lose my hair with the radio. It took a while after to come out (about 2 weeks), and took ages to come back- about 5 months really. Its still very thin on the top and VERY grey, I wasn’t at all grey beofre! But I dye it and was just so happy it came back as I really thought that was it, baldy forever. This was my third time of losing hair so actually got used to just being bald and often didn’t bother with any head covering, especially as it was hot.

I’m not allowed to drive as I’ve had tumours dx in my brain, irrespective of whether I’ve had a fit or symptoms. My onc says I need 2 years clear. They have never actually taken my licence away but terrified that if I do have an accident my ins would be invalid or I’d hurt someone else so I haven’t risked it. Might be worth checking this out. Let me know if you find any definitive rules!

I was on steroids for about 3 months after, it took a long time to wean me off them gradually as if I dropped too quickly it made me dizzy.

Last one, no my mets have all seemed to have appeared at regular intervals! Spine mets Oct 2004, Liver mets Apr 2005, Brain mets Apr 2006, Further Bony mets in skull, hip, pelvis ribs etc… Nov 2006 but CT scan May 2007 and no mets detectable. Mind you that doesn’t show the bone mets but they seem ok as not much pain these days. I’m on the chemo now predominantly for my boney mets but onc said it would mop up any remaining mets in the brain too. (for now anyway!)

Phew, hope that all helps. Help her to get through the radio and just take a day at a time.
Good luck, thinking of you.
Love Kitkat

Not sure how the pm thing works on this site, I expect it says in one of the threads! Haven’t tackled that yet.

Hello Kit Kat

Nice to see you on the forums and glad to hear you are keeping well.

You asked about the pm system so I hope this helps

To use the private messaging system just type the name of the person you wish to message in the box marked ‘send a private message to’. Remember user names are case sensitive so make sure you have any capitals in the right places. The message will then appear in the discussion thread where you have posted but only be visible to you and the person to whom you have sent the message.

When you are logged on you can see the messages you have sent and have received (the ones you have received say ‘private’ in blue next to the message). You can tell if a message you sent was private because it will have the name of the person you sent it to next to your user name.

Kind regards
Forum Host
Breast Cancer Care

Hi Jenny
Thanks for the web address. Most of it went over my head but a few new names of treatment for me to note if I need them!
Love Kitkat

Hi Geraldine,

Sorry not to have responded to your question sooner, but picked up an ear infection and have been feeling a bit grotty. However, I am so glad that KitKat has been able to help you. I was diagnosed with brain mets just recently and have completed my WBR sessions…hence the ear problem according to my Doctor. I am on herceptin as I am HER2 positive, I also have bone mets which were diagnosed early last year and I have no problems with them at all. Herceptin is still doing a great job as the rest of me is NED at present. My oncologist has said that I wouldn’t be given any more chemo at present and that I would be having a scan in 3 months first to check the outcome before he considered any more treatment. He is very positive, which has helped immensely I have lost my hair as well…for the third time, but who cares. I was not given any steroids, so can’t help there.

I was advised II was not allowed to drive for possibly 2 years, which is really frustrating, but you get used to it. I have my free bus pass now so can get out and about if necessary. Hope things go well for your friend.

Jenny…that was a really good article, thanks for posting the address.

Diane xx

Hi Kitkat and Vintage57

thank you both so much for your posts, I have read them out to my friend this morning and I can just tell from the way her voice lefted at the end that it is helping. The info on hair and driving has helped her, she is seeing the Oncologolist on Wed so I will be in touch after that. Thanks again for sharing your stories.

Love Geraldine