Hi everyone, I had an mri scan following what appeared as a stroke but didnt show at signs on .ct scan The mri came back with brain mets and poss diagnosis of a couple of months.
I am obviously devastated but wondered if anyone else has been given a short diagnosis and gone on to live longer?
Two months wouldnt give me time to sort out even my shoe cupboard let alone put my life in order.
Can anyone also give me experiences of WBR.
Many thanks AnnB xxxxxx
Hello Ann,
So sorry to hear of your diagnosis. Please do give the helpline a call for some extra support at this time, I’m sure they’ll be able to give you some information regarding WBR.
Take care,
Jo, Facilitator
Dear Ann
What devastating news and I’m sure others will come along who unfortunately have experience of this. I have read of quite a few ladies who’ve had treatment for this and are doing well. Thinking of you and hope that the treatment will give you relief.
Hugs
Ruby xx
Ann thinking of you! Have sent you a PM on facebook.
Look after yourself xx
Dear Ann,
I am so sorry, you must be absolutely devestated! I can’t help from personal experience but I know from the forums that people can have successful results from things like WBR and go on to live for much more than a couple of months. Hopefully one of those women wil notice your post and be able to give you some answers.
Thinking of you and hope you get some answers which might give you some hope amd comfort soon,
with love and hugs, Juliex
Hello Ann
I am so sorry to hear your news and can only imagine how devastated you must feel.
My Mum had a Glyblastoma grade 4 primary brain tumour (not mets) and although initially given a very short prognosis went on to enjoy 14 months with us with the help of radiotherapy and large doses of steroids. I have absolutely no idea how similar primary tumours and mets may be, and I am sure that the location makes a difference, but I just wanted to pass on what may be a small hopeful note.
I am sending you hugs and best wishes.
Jacqui
Hi Ann
I am so sorry to hear this devastating news and I do hope there is some positive results with whatever treatment you are offered. There have been several threads on here recently about brain mets and I know Belinda has posted a diary extract from a previous forum member, KitKat, who ‘talked’ about her brain mets treatment. If I can fish out the thread I’ll post it on here, but I don’t think it’s beyond page 1 or 2 of Latest Posts. Wishing you all the best
Nicky x
I’m so very sorry to hear your news Ann. I had 2 friends who outlived their prognosis. One friend lived for nearly 2 years…I think she had 10 sessions of WBR. Another friend lived for about the same time. I don’t know how many WBR sessions she had but I do know she had some good quality time during those 2 years.
Am sending you PM…Good Luck and Love…Belinda…xx
Posted same time as Nicky! …if you can’t find Kitkat’s diary Nicky I’ll post it here in a little while…x
Thanks Belinda - you may need to as my ‘posting a link’ hasn’t worked. I do know that the thread is in the Living with Secondary BC section under ‘are brain mets more serious?’ topic
Good Luck, again, Ann
xx
Hello again…Kitkat’s diaries.
Kitkat sadly passed away many months after her WBR from other complications due to the disease that were not, I believe, in anyway related to her brain mets. She had very succesful WBR results.
Wishing you all the best results possible Ann.
Lots of Love, Belinda…xx
Brain Diary Hi All
I’ve decided to impose on you all my lovely journey through brain mets as there didn’t seem anyone out there who’s done it recently/firsthand. Don’t want to scare, rather to reassure, so if you don’t want to read, stop now!
As you may know, saw the doc last week who confirmed brain mets. Hospital called Tues ( week later) for me to go in Thurs for mask and simulator for whole brain radiotherapy. Have to say, VERY impressed at speed of NHS here, also slightly scared that they felt it necessary to do it so quickly!
Mask was fine! I was worried I’d feel claustrophobic, but it was a bit like having a a warm string vest put over my face! It was only on for about 5 mins and then cooled down. Then they clip you down on the table, but the radio is only about 6 mins total, so I can do that! Easy! No tattoos as they draw on the mask!
She also showed me the MRI films and the mets were very small white spots. About 6 or 7 dotted around, but lower in the brain than I had thought. Not many in the top bit, and one a bit alarmingly near my optic nerve, but she reckons this radio will stop it inflicting any damage.
The radio will hopefully reduce them but, as usual, won’t get rid of them. Whether they recur is apparently dependent on what happens elsewhere in me, but as liver and bones seems stable for now, fingers crossed.
I start next Tues, 10 sessions over 2 weeks. Hair will go patchy and thin again, but it may not come back this time. Still, rather be here and bald, than hairy and not!
Feel so much better now its all going ahead and I can deal with it! Been working out driving rota and babysitting rota today.
Driving by the way, is off for the ‘forseeable’. basically if I ever want to drive again, the doc would need to fill in a form for the DVLA. Just going to have to get used to it, and use taxis and buses etc.
Was a bit concerned that this would in some way change me, my personality, but just going to have to try it and see. Surgery is not an option cos there are just too many.
Steroids seem to be stopping headaches and clumsiness, still a bit woozy but think thats the steroids themselves! Plus, they give me thrush so mouth back to cardboard and weight dropping off again. Mind you, I’ve got plenty to lose so no worries there!
Anyway, think thats all for now, let you know how its going next week.
Love Kitkat
Brain Diary Part 2 Hi Everyone,
I’m back! 4 whole brain radiotherapy treatments done, 6 to go and not feeling too bad!
It’s a very strange experience when you actually have the radiotherapy. When I’ve had it before on my boob and back, there is no smell, no lights just buzzes. This time there is a definite smell, kind of burning but not really, they call it ionising apparently, but my friend whose been driving me noticed it in the car! It also flashes a kind of blue light at the back of my eyes which has baffled them as its not supposed to! I think it must just be zapping a particular nerve in there somewhere! Its so quick though that I don’t have time to worry. I have to say that by the end of it, I’ll be glad to finish!
I’m feeling more weary today, and had a bit of a funny ear last night which is all down to swelling in my poor head. I do feel a bit like a bit of bacon! Hair still there, but scalp definitely feeling tingly kind of pre hair fall out feeling for those who’ve had chemo.
Anyway, will have a good sleepy weekend. My poor Mum has been away on holiday since all this kicked off and knows nothing about it, because I so wanted her to have a good holiday, so thats all about to hit the fan this evening. I hope she’ll forgive me.
Hope everyones doing ok
speak to you when I can
lots of love Kitkat
2nd part of Kitkat’s brain diaries…
A new bike for Christmas Hi all
wanted to tell you all about my early xmas pressie as I’m so excited and proud of myself!
I got a big shiny purple bike! With lots of comfortable padding and good suspension for my poor ole bones.
Been out with hubby and son and did 2 miles and felt really brilliant and alive! Fantastic, and its exercise and a bit of independence as I can’t drive.
Would definitely recommend it despite my mothers worries about my bone mets!
Loe Kitkat (exhausted but happy)
More Good News from me too! I wanted to share my good news too with everyone as sometimes we forget there is hope!
I’ve recently had CT scans on brain, abdomen, neck, pelvis and there is NO EVIDENCE OF METS !!! For those who don’t know I had liver mets and multiple brain mets (see profile) and am so overjoyed I can’t quite take it in. My onc said he was pleasantly surpised as he had expected there to be some activity!!!
I do still need to have bone scan as he thinks any cancer activity here might be the cause of my recent anaemia but I can deal with bone mets! Its not the bone mets that see you off is it.
Feel like the huge cloud I’ve carried around has been lifted, for a little while anyway.
So don’t give up, hope my news cheers you as much as it has me!
With love
Kitkat
Hi Ann
I’m sorry to hear your news and the short prognosis you have been given. Brain mets are scary - I too was diagnosed on New Years Eve with 3 mets in back of brain affecting vision, plus speckles elsewhere. It was a huge blow. I also have mets in liver bones and lungs which had been responding reasonably well to docetaxol.
I started 10 treatments of whole brain radiotherapy on 10th January which I have to say I found extremely difficult - headaches, tiredness and nausea though steroids eventually helped -I should have been onthem before I even started but wasn’t given them till day 2 - do ask about them for you. I also ended up in Hospital for 3 days but fortunately got sorted out there, am home and am definitely regaining some strength now and feeling more positive. We are of course all different so please don’t expect same thing to happen to you - I hope you tolerate it well and that it works quickly. My onc,because I asked him, said my life expectancy was up to a year and of course I do hope to exceed that and that you and many others onhere do too. I’m thinking of you alltonight and hope you are sleeping peacefully - my brain’s in overgear tonight so catching up on the computer.
x
Just wanted to add my personal hug.
I can’t imagine the breadth of the impact upon you.
I hope you can feel some of the support and hope offered here by other women in similar situations.
Just wanted to hold your hand tonight and squeeze it tight.
Bless you Ann.
You are in my thoughts and my prayers.
Welshgirl xx
Hi Ann
I am so sorry to hear your recent diagnosis and understand your fear. If you’ve read the other brain mets treads you’ll know that I had a single brain met diagnoses June 09, removed and then a recurrence Sept 10. That was also removed and I had RT too. Like Twinmummy, I found that really hard work but have been assured that it is very effective. I asked my onc back in June 09 how long and he said he hoped 2 years. Well, 18 months later, I don’t have any brain problems although my liver and bones are not playing ball at the moment. I know a lot depends on where your mets are and the effect they will have on brain function, however the treatments are good and effective. Bt almeans ask more questions, knowledge always helps me to cope.
take care
Louise
Hi AnnB,
When I was diagnosed with 3 brain mets in February 2008 I wasn’t expected to make it out of hospital. But I’m still here and feeling preyyt good 3 years later. I had steroids and whole brain radiation initially, and capcitebine for a recurrence of Inflammatory Breast Cancer a few months later. My January scans show no active cancer. Just because you are statistically likely to die doesn’t mean you necessarily will.
Best of luck and all my love, Lynn
Hi everyone and so much for all your good wishes which must be working as I have a strange strength of serenity since my diagnosis which is not usually like me, Im normally haywire.
Im trying to hold on to the feeling as long as I can and can feel the good vies I am receiving (even had a text from the top of the Himalyaus
this morning
Keep positive with all your treatments girls
lots of love Ann B xxxxx
Hiya, just wanted to lend you some support - i got BC 5 years ago when i was 38, had a mastectomy and chemo and radiotherapy at that time. Was fine for about 3 years then got secondaries in the liver, lung, hips, and spine. Had further chemo for that and was fine for about a year, then i was hit with brain mets just last August. I had 10 sessions of radiotherapy to my brain but havent had any follow up scans so im not really sure what the position is. My liver also started playing up again just after brain diagnosis - I am on xeloda for that just now and it seems to be keeping the liver stable for now. My oncologist has not told me how long I have, nor did I ask her, I am too scared, but she did ask if I had my affairs in order so Im assuming it might not be that long. In saying that tho, I am feeling well, eating well, and managing to work. Its very hard living with this, when it goes to your brain that is pretty much it I think, its just a question of time…
Please try not to dwell on how long you have, try and keep a positive attitude and make the most of what time you do have, you never know you or I could be a statistic that goes against the odds, why not ??
Also, if your feeling well take a walk every day, I have two dogs to walk and I honestly feel better for it, this cold wintry weather fairly clears your head.
Good luck, Jackie XX
Hi Ann
I was diagnosed with brain mets almost 3 years ago and am still here. I have had a few recurrences since then and in Dec 2009 a neurosurgeon told me most people with brain mets don’t live beyond a year ( even though I didn’t ask him!) I am on constant chemotherapy but have managed holidays and am generally well. This must be very scary for you but lots of people outlive the prognosis and my WBR was ok I just felt really tired for a couple of months.
Take care, Gemini.
Hi everyone and thank you all for your experiences.
I have my hospital treatment at Macclesfield General Hospital and cannot praise them enough for the care and time they have given me over the years.
The oncologist I see at Macc is also based at The Christie Hospital and she said she as had another oncoligist at the Christie and also another one from the Royal Marsden and the have all beenmusing over my scan for the last 3 days. I have multiple areas, verthinly spread like icing sugar that is almost invisable and really did take some spotting.
I asked once this 5 days of radiotherapy finished was that going to be it and she said oh no we still have some surprises up our sleeves for you yet, so maybe having more the extra views have added more to my treatment than I was originally given, I know its not a cure but a couple of years would make the world of difference.
Heres hoping, cheers again Ann B xxx
Oh I hope so Ann!
That does sound encouraging. We all realise that there won’t be a cure for most of us, but we can’t ever have our hope taken away.
Here’s to those extra years!
Nicola xx