I was initiaaly diagnosed with breast cancer in sept 2002 and had a lumpectomy, lymph clearance (12 of 24 infected)8 fec chemo, radiotherapy, a year of herceptin and then tomoxifen. I have had a fabulous clear 7yr and then i started with headaches and on 18th sept was told i had secondary in my brain. Within the week i had had more appts scans and luckily it was a single mass which was removed and i am now home recovering with a very impressive scar. I have now got to have full brain radiotherapy and although i coped really well with it last time i am PETRIFIED as its on my brain but i dont like to tell anyone around me because i dont want them more worried.
Can anyone tell me what to expect? It also sounds very trivial but i have been told i will loose my hair which maybe permenent, how do you cope with that? (i used a cold cap and did not loose my hair during chemo)
I have never joined a forum group on line so lots of new experiences in my life now!
Kate
Hi Kate, I am sorry I don’t have any answers for you but would just like to offer you my best wishes, I am sure someone will be along soon to discuss with you, take care love junieliz
Hi Kate,
Welcome to the forums, I’m sure you’ll get lots of support here. I have put for your below the link to BCC’s publication regarding secondary cancer to the brain and hope you find it useful. If you would like to phone the helpline the staff here will talk to you more about what to expect with regard to your treatment and of course offer you some good support. Calls to the helpline are free, 0808 800 6000 lines open Mon-Fri 9-5 and Sat 9-2.
Secondary cancer to the brain:
I hope this helps. Take care.
Jo, Facilitator
Hi Kate
My daughter had Whole brian radiotherapy and she said that its not as scary as it sounds. Like the other rads that she had you feel nothing and she was only in the machine for about 45 seconds to a minute each time. You have to wear a mask which again sounds scary but it isn’t. Unfortunately yes you do lose your hair after about two weeks I think it was… but everyone I know who has had WBR has had hair their grow back. I think it must be an exception if it doesn’t.
I am so sorry to hear that the cancer went to your brain but it does sound optimistic that they managed to remove it. The WBR will be as a precaution and will zap anything else in tehre!
Best of luck and don’t be afraid … Lisa always said that chemo was far worse.
love Sue x
THANKYOU THANKYOU THAANKYOU. I am going for my planning today and your words have made me feel so much better.
I hope all is well for your sister, and she is lucky to have such a caring person in you.
Kate
sorry daughter not sister. I was so happy at what you said i did not read correctly.
Sorry to hear about your diagnosis. Just wonder if you have thought about Gamma Knife rather than whole brain radiation. It’s available at a few hospitals and is targetted radiotherapy. I have had this twice and only lost a small patch of hair which grew back in about 3 months. Hope all goes well whatever treatment you have, Gemini.
Must admit i have not heard of it. my tumour was fully removed so there is no mass to target with radio so hence full brain. I must admit that as i still very numb i am just going along with my oncologist and not asking questions, i will mention this to her, thankyou.
Hi Kate,
Dis you see the documentary about Seve Ballesteros last night? I t was really good.
He had a very “difficult and dangerous” tumour on his brain which was removed and he allowed the cameras in when he had his radiotherapy. He lost his hair but it has grown back completely.
He has made an amazing recovery and is back to playing golf, his goal is to play in the british open next year!!
What an inspiration to us all.
Good luck with your treatment.
Take care,
Love,
Janx
Maybe I could try crazy golf! My eyes are not great now and i shake all the time. Not sure how much is steroids and how much is put up with it!
1st radio this aft,will feel better when its over and i know what to expect.
Thanks for getting in touch, it really helps to know that people care.
Hope you are ok
Kate
Hi Kate, just wanted to wish you luck with you first treatment. I was diagnosed with brain mets last week and have my first WBR on Wednesday. My eyes are being strange too - lots of double vision when I walk around but OK looking at the telly or the computer. Looks like we could have a round of crazy golf together sometime!
Deirdre
Hi,
My eyes just dont seem to focus properly and are very dry. Memory really bad too and i keep getting words wrong. The kids think its hilarious and the sales figures for post it notes have shot up as i now have them all over.
How are you coping? I have been told the radio is going to make me VERY tired as well as the usual headaches, nausea and hair loss, i did ok with it when i had it for the breast cancer, how about you?
Keep your chin up and thanks for getting in touch
Kate
Hi Kate & Deidre - so sorry to hear about your brain mets. I know this is the scariest news that any of us could get, so I do realise how much toughness it takes to get through this. I’m sure you’ve both been reading the ‘Debs in Cornwall’ thread - who has also recently been diagnosed with brain mets - and on that thread Belinda has placed some info from Kitkat who had a really positive experience with brain mets treatment. I think those kind of messages are much more helpful than anything any of us can say. I hope they are for you too.
I’ll be thinking of you both as you go through this - so please, if you’d like, - keep us informed.
much love
xx