Finally my MRI results are back ... it isnt one metastasis in brain from my ovarian cancer but a few. So now they have said i cant have the Stereoradiotherpy. I sm devastated. The brain tumour was found in November and only now is this being dealt with. I had to go to PALS to get my urgent MRI. Now saying whole brain radiotherpy. Reading up about it it sounds awful. i am sitting here in tears. I dont want to loose my memory and be angry.
I feel the only way out is to end my life. I am so so scared
Hi Lorna so unfair what you are now facing you must feel so let down sometimes I think people seem to get the bad luck other people seem to avoid . Right now you are in shock and can see no way out which is a totally normal reaction everyone would feel.the same we are only human and information like that is about the worst we can be expected to endure .If you haven' done so already call the helpline or failing that the Samaritans you need somone to talk to .Also cancer takes away peoples control you can decide what you want to do its your choice . Also have you family or close friend you can be with you shouldn' be on your own things always seem worse if you are facing it on your own . I also hope someone who has had wbrt will respond to your post with their own experience it' always better to get first hand reports rather than leaflets or info from the internet .And lastly we are all here for you you can speak to me or anyone else at any time even if we don' have the answers you are not alone take care
Sue xx
Granny Sue
Hi Lorna
I had this treatment in December it is devastating however not painfull in any way
They make you a mask to fit over your face so they can hold you in position to deliver the radiation
If you are in anyway worried about it you can have a drug to keep you calm
You then return for the treatment usually the following week when you will geet between one and five doses you will be told in advance
They lay you on the machine like a MRI and clamp your head in position again you can have the drug to relax if you need it
It takes only minutes you feel nothing no pain
You then stay on the steroids which they gradually reduce
After twelve weeks they see you again after an MRI
Dont give up fight with me and stay positive
xx
Sue again Lorna have you asked for a second opinion as well .I know Tony M did the team you have had so far don' seem to have done the best by you .There are also trials that will sometimes be available to people let us know how you get on lots of hugs xx
Granny Sue
Hi Tony M. I have had radiotherpy on my neck about 4 months ago and worked very well. I was diagnosed with Brain mets november 25th. Put on steroids immediately told us how urgent it was kept me in overnight so i could get mri scan next morning...which never happened they srnt me home the next day. We have found it so hard to come to terms with and live a normal life. i am now so panicky frightened to do anything. Its now January 20th . I had to go through pals to get my urgent mri scan ..that was new years eve. Gp has now found out i dont just have one tumour but a few news to me... and i csnnot have the Stereoradiotherpy that they planned. I cannot believe i have just been left. I feel its their fault i cannot have the Stereoradiotherpy they left it too long. So now i have bern told its Whole brain Radiotherpy..i have heard awful things about this treatment ...Change of personality memory loss... i am terrified. A friend was given just chemo which i wouldve gladly had 8 weeks they wasted . So i hasve an appointment on Wednesday for planning appointment. I dont know whst to do...will i still die in months ? The oncologists never tell the truth thats whats so bad. My hubby and 2 children are coming too.
I have been fighting Ovarian cancer since 2012 and done well. ALWAYS told it will not go to Brain... but it has. I just so want to speak to someone who has had full brain Radiotherpy and what were the results...i know no one.
Thank you so much for replying . Very grateful .
Thank you Sue for your most welcome reply. I am grateful. Sering oncologist for planning appointment on wednesday. But im terrified of what i will end like as i just explained to Tony M.
My family are so good but i feel alone and so scared. Am i going to die very soon..is there any hope at all?
They promised a certain treatment then left me since November 25th with just high dose steroids. Feel like they just arent bothered. I do everything they ask.... No idea what yo do. But cant live like this...i want to live but i dont think ill make it now. Everything is so negative. So sorry to moan. But thank you for replying x
My husband had whole brain radiotherapy back in April and had very good results. He had no pain but he did lose his hair a few weeks later (which grew back in time). He had a lot of tumours and his memory, cognitive skills, speech and sight were already badly affected before the treatment but they were all greatly improved by the treatment.
Sadly, in his case, the benefits of the treatment were not long term and over the next 8 months the symptoms slowly crept back. He died 5 days ago but the treatment gave him several months that he wouldn't have had.
You are not moaning you are saying how you feel about an impossible situation .Gather your family about you and let them shoulder some of this that is what family is for better or worse in sickness and in health . You will face it Lorna just take it one day at a time that is all anyone can do .Bills results are on 2nd Feb we don't know what the future holds and sometimes the present isn't so great but we are still.hanging in there .Good luck Lorna and keep posting we have your back .
Sue xx
Granny Sue
Sorry for your loss you have been to hell and back by the sounds of it . The worse thing about brain mets is they take the person long before the cancer does.Still adapting to Bills new personality parts of which I don' like but the man I love is still here and will do the best I can for him as long as I can .Take care of yourself and all my best to you
Sue xx
Granny Sue
I am so so sorry to read your husband has sadly passed away. How absolutely devastating.
And i thank you for taking time out to respond to me.
I am very scared but its not knowing if i have much time ..i gues ill be told in clinic.
I hope you can stay strong through your very difficult and sad time x
hi Lorna
its me again
only we as sufferers know how we feel . I am afraid we have little control over the emotions from the steroids and none from the brain damage that we may have suffered .
On the other side are our closest family who will be taxed to the limit by our change of mind and inabilities to be the old us
The third part of this equasion is tthe Oncologist who basically is on a guessing game
I will take you back to my beginning
4 years ago I had bowel cancer which was within the walls of the bowel , nowheree else lymphs or anywhere . It had taken 2 years to find it after failing the poo test
In January 2017 I was ttold after tests that I was cancer free however unbeknown to the Hospital a rogue blood cell had escaped in thee operation 4 years ago were
Th is set itself up in my lung and was undetectable by any test , at some time it decided to move to my brain probably late 2016 .
In June 2018 I had a brain seizure and was hospitalized for four days . In the words of the doctors " you are terminal you may only live for weeks" and they had age assessed me as well (73)
After 8 weeks of argument and with the hospital and after my MP, GP, Newspapers And the regional cancer Executive getting hold of the hospitals failure I was sent to the top brain surgeon at Addenbrrooks Cambridge
Within the week I was councilled and told the risks of open brain surgery. I had the operation and was home in fourr days
There tthen as is always a 12 week wait between operations then theyy removed thee lung tumour
The brain seemed fine some trembling and general weakness and I was told the lung tumourr would never return
Thee GP insisted on a brain scan and they did a CT due to tthe dead leg six weeks after thee lung operation
The brain tumour was back however I could not have an MRI until 12 weeks after the lung operation
I was having problems witth the Oncologist in my original hospital with his attitude so when I had the result of the MRI I transferred my treatment in total to Addenbrooks
Within days I was seen again I had two tumours in the same site as the original operation
Again within days they gave me radiation to both by steriotatic surgery
I have 6 weeks now before I go back for the results after a full body MRI
I have met twice with my new Oncologist who is much more on thee ball tthey even found blood clots on my lung from DVT due tto the high risk with cancer and I have clot busters as well
\\\\there are two other points yo
The second is as you are terminal you are entitled to a DS1500 which allows you to claim a weekly grant from the DWP it is not means tested , you may also have a blue disabled card again ask the GP
Well that tells you where I am at
With regard to the Oncologist he will only give us weeks or months of prognosis as they have no way of knowing how the brain cancer will affect any of us
With treatments I haave researched there is PROTON BEAM which they may send you for but not in UK at the moment. Look it up you can haave it privately at a cost in Europe or the US
The the following drugs DABRAFENIB, PEMBROLIZUMAB and TRAMETINIB which I will discuss with my Oncologist on the nest visit
There also trials of new drugs that you may wish to go on
Well that is it apart from the fact that I am still here even though they told me I only had weeks
You need to be positive when you see these people , be in control not them control you
Take a list of questions with you to ask
Most of all hang on iin
You may get type 2 diabetis from the steroids so worth the simple test with the GP
Whatever cancer throws your way, we’re right there with you.
We’re here to provide physical, financial and emotional support.
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