My mother has been diagnosed with brain mets, she is 58 years old,she has 5 tumors, she also has secondary in her lymph nodes above the collar bone. she is undergoing wbr at the moment 5 sessions and then to see about starting chemo again for lymph.She is hormone negative and her2 negative.She was first diagnosed with breast cancer 12 years ago, clear for 10 years and then returned last year in her lymph node, has gone through a few chemos to shrink tumor in lymph but has started growing and now has brain mets.I was hoping that someone could offer advice on what other treatment my mum could have and what questions i could ask the onc, i am desperate to make sure she has every chance and option avaliable. we have an appointment on thursday.
Sorry if the spelling and some of the terms may not be accurate.
kind regards,
al.
Dear Al
Welcome to the forums. I am sorry to read of your Mother’s diagnosis of brain mets and hope that we can help you to find the information and support you need. Breast Cancer Care have published a factsheet about brain mets which may help you to better understand the treatments available and you are also very welcome to call our confidential helpline for further support and information. The number is 0808 800 6000 Mon-Fri 9am-5pm and Sat 9am-2pm.
You can read the factsheet via the following link:
breastcancercare.org.uk/docs/secondary_breast_cancer_in_the_brain_0.pdf
Best wishes
Lucy
Hi Al,
Sorry to hear that your mum is back on the treatment trail.
I am sorry that I can not give you any advice as I haven’t experienced brain mets. I noticed no one other than the moderator had got back to you yet, I guess its because it is so rare and people haven’t logged on over the New Year.
I strongly advise you do contact the helpline they really are helpful. Hopefully one of the users of this site will also be able to give you some advice.
My best wishes to you and your mother.
Carol
Thankyou carol for your kind words, have been to see the onc and she doesnt seem very hopeful, mum is not responding as well as she had hoped to steroids and has finished wbr, we have another appointment in 3 weeks to see if she has made any improvement.I just wish there was something else we could do.Pretty much everything i suggested to onc (gamma knife,capecitabine, more wbr,vitamin b-17) she said wouldn’t benefit mum unless she responds well just now.
I will contact helpline and ask for there advise.
kind regards,
al.
Hi Al,
Ive only just read your post and am sorry to hear about your mum, it must have all been quiet a shock, especially it coming back after so long, I always thought that the “10” year mark was it and we were always supposed to be “cured”
It sounds like you are you are a bit further along now with treatment, appointments etc. I am wondering why she only had 5 days of WBR? I know that the younger you are the more they give you, but i thought 10 days was pretty standard at 30gamma rays. Remember that Radiation effects tumors slowly, as they say “it wont happen over night, but it will happen!”
I was dx almost 3 years ago now, same type as your mum, it came back in my brain 18m later. (although some think it was probably always there, we dont scan the brain for mets here in Oz) it is very uncommon and would cost the govt too much. Anyway. Had surgery, they removed big tumor, WBR 10 days, it shrunk another small tumor. (dec 06) I have just had sterio tactic surgery in Sydney where they have blasted it the same baby tumor. Dont have another MRI for few months. They say they have 80 percent success rate. If the tumors respond to WBR they almost certainly do to sterio tactic. In the uk you have the Gamma Knife machine and the place to go is Sheffield or Bristol. (we looked into every where!).
Everyone (medicos) where very negative when my brain mets where dx. They would say “where there is one, there is two, where there are 3 there are 4” blah blah blah, They are amazed to see I have no NEW tumors after 12 months. The gamma knife is perfect for tumors when they are small.
Anyway Al, hope this encourages you even a little bit to keep fighting on… Love to your mum and I hope her head isnt too itchy!
Love Suzy