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just diagnosed with brain mets help me please

7 REPLIES 7
minty27
Member

Re: just diagnosed with brain mets help me please

Thanks bill ben your a star xx

bill-ben
Member

Re: just diagnosed with brain mets help me please

Hi Minty I haven't been on here for a while as we have been busy moving house. Well house to bungalow it's been like trying to fit a pint pot into an eggcup but that's another story!! I to am one of the brainy ladies. Before I had my BC diagnosis I had been suffering from what I call wobbly legs feels a bit like you are drunk!! GP thought it was an ear infection.then I got diagnosed with BC and had a mastectomy. Scans after showed it had spread to my liver ribs and spine then my sight in one eye went peculiar, another scan showed it had got to my brain. That was a year ago. I had my brain zapped with 5 lots of radio as I have been told because of where it is it cannot be operated on.I was supposed to have 6 lots of chemo as well but because I totally stopped eating for 6 weeks I was taken off it after  2 lots and put on Letrozole which luckily has had some positive results on my liver. I have been told Letrozole only works from the neck down and by another onc that it can help the brain! Anyway after a year I still feel well. The biggest problem is the poor sight in my right eye distorts what I see from my good eye. My family lovingly call me Wonky. Wonky eye, wonky legs and wonky tit !!! It is a scary time but I always have said you have two options sit in the corner and cry or get on with it. It's more than frustrating when you have to admit that there are some things you cann't do now. My most stupid idea was that I could still ride a bike as I would be sitting down! It didn't work I fell off!! It is probably the steroids making you "Evil Woman" especially at silly o'clock in the morning. When I was taking them I could be really bitchy and would be wide awake in the middle of the night with a case of the munchies. I watched an awful lot of rubbish  TV in the early hours of the morning at the time. A few practical tips. If your legs are still wobbly get some crutches or sticks they make such a difference especially to your confidence when out and about. Get the physio people to sort you out with any aids to help like grab rails in the bathroom and a perch stool for the kitchen if like me you get tired or unsteady while you are cooking. Look at the thread on here somewhere about PIP as you should qualify for that. This disease is s**t but don't let it win and get you down. Have your tears and rants (especially on here as all the ladies totally understand how you feel) then say s*d you cancer and carry on and enjoy that new grandchild . Let us know how you get on and sending hugs to a fellow brainy.

nicky08
Community Champion

Re: just diagnosed with brain mets help me please

Olives, how lovely to hear from you and that you are doing well. Long may it continue.
Minty, sorry you have had your recent diagnosis and it's totally understandable how awful you are feeling right now and maybe lashing out at the ones you love. I think we can all remember just how much a secondary diagnosis rips your world apart and there's no one to turn to. It's good that you have found us here as we are all supportive even if we do not have the specific mets that each other has. I'm glad you have had a reply from a brain mets lady, Olives, and I hope you get some answers from your oncology team as well regarding what type of treatment they put you on.
Take care
Nicky x

Olives
Member

Re: just diagnosed with brain mets help me please

Hi. Just seen your post. I was diagnosed with primary breast cancer in 2012, had mastectomy, chemo, radio, Herceptin and then put onto tamoxifen. Told in Jan 2014 all was ok then had a massive seizure in Feb 29014 when they found a 2cm brain tumour. Like you they thought it had been there since beginning. I was put onto steroids and epilepsy meds to reduce swelling and stop seizures. For a week all I did was cry. I was convinced that was it and I would only have months left. I had a craniotomy in March 2012 which surprisingly was not half as bad a I thought it would be. They managed to remove all tumour and I have had regular MRI scans since and so far, fingers crossed, things are stable. It is all very scary but you can get treatment and life can go on. Hope this has helped a bit. Feel free to ask any questions you have. If I can answer I will. I usually check site every few days.
Jo_BCC
Member

Re: just diagnosed with brain mets help me please

Hi Minty

 

I'm sorry to learn of your latest diagnosis and hope that you find the support your are looking for here.  To help you along I ihave put for you below the link to one of BCC's publications you might find helpful

 

http://www2.breastcancercare.org.uk/publications/secondary-breast-cancer/secondary-breast-cancer-bra...

 

Also, our helpline team will be only too happy to talk to you, they're here to support you through this.  Calls are free, 0808 800 6000 lines open weekdays 9-5 and Saturdays 10-2

 

I have also put you the link to the area of this website where secondary cancer to the brain is discussed further, I hope you find this helpful.

http://www.breastcancercare.org.uk/breast-cancer-information/treating-breast-cancer/secondary-breast...

 

Take care,

Jo, Moderator

 

2catlady
Member

Re: just diagnosed with brain mets help me please

Hello,minty,so sorry you have been to hell and back. Yes,it's understandable you are scared and you are lashing out at the ones you love. We've all done that.
Hopefully a brain mets lady will be able to help you.
Huge hugs,Helen xxxxx
belinda
Member

Re: just diagnosed with brain mets help me please

What a shock for you Minty. Hoping someone with brain Mets will see your post but if you have the one tumour or even a few tumours I wondered if you have been considered suitable for cyber knife treatment? It's often a kinder treatment than whole brain rads and can be repeated I think. Good luck, stay in touch with us. X
minty27
Member

just diagnosed with brain mets help me please

HI after feeling off balanced and despite being ignored by gp i had a brain scan last wed 2 june at 8am at 3pm onocologist rang to get me in hospital pending mri scan

petrified after receiving this shock call we sat for 3 hrs with no one seeing us despite it not over busy telling us the results of my scan. apparently i have a 2cm tumour on right side on or blloddy close to brain stem, they think its from breast cancer which i had not even 4 years ago. |Life turned to hell in 24 hrs. i had steroids then went home refused to stay. next morning bk in for mri and ct scan. then the following day was already ironically a prebooked onc appt where i finally got my sentence. My second grandchild due this week and my son has autism and severe anxiety for last 3 years which probably hasn't helped me at all. i am 51!!

 

today i have been evil since 4am saying dreadful things to my husband bullying him telling him to leave now i am scared i have done eve more damage. My life is in brain surgeons hands help me please how do i stop thinking about this especially since my mobility is already impaired.

 

I know thi is a rare one i got through breast cancer with unusually unlucky side efects and even set up a support group for 90 local ladies but am so lost at the moment.