Grade IV Gliobastoma with brain injury

Bhoycer · New User Joined: 12 Aug 2008 Posts: 6 Location: Scotland

My name is Rebecca, below is a synopsis of my dads past few months that have led to the diagnosis of a grade IIII malignant gliobastoma.

On June 6 2008 my father suffererd two grand mal seizures in his office, was taken to hospital and discharged that night without a CT/MRI scan.
We were told to organise a scan through his GP. His GP advised of epilepsy and that he should remain off work and that a scan should take no longer than a few days.
Notification was received for my dad to have a scan on June 23rd.(17 days after his first seizure)

On June 21st my dad suffered another seizure, this time falling outside and hitting his head off a concrete pavement
He suffered a massive and significant head injury, was taken to A&E where he was tubed and transfered to the Southern General Hospital in Glasgow which specialises in head injuries.
An emergency operation was performed to remove clotting around his brain, hs skull was also fractured. We were told to prepare for the worst.
Hours after we were told the surgery was a success.

Dad spent his next week in high dependancy, when transfered to the neurosurgical ward he was taken for a scan, the results of which showed a growth in his left temporal lobe.
A biopsy was done and a week later we were given the diagnosis...a non operable, malignant grade 4 gliobastoma.

At this point we were told that in a 'healthy' person's brain, radiotherapy could pro-long dads life for 2-3years. However my dad's brain is not healthy and has still to repair itself as best it can from his head injury.
Discharged from hospital on July 14, he was given appointments with radiotherapists.

Our visit to the radiotherapist two weeks later gave more bad news, my dads brain is not healthy enough to receive the 30 doses that anyone else with this tumour would normally receive, he would instead get 6 in the hope that it would give him a few more months...not years.

Presently dad is greatly confused, though we enjoy a few fleeting moments of clarity. He is not aware of the extent of his condition...or its long term prospects.

My Mother, younger sister and brother and myself are now left with the agonising decision of putting him through radiotherpay or not.

I was wanting to know if anyone knew of or had experienced a similar situation.

We have been told of the side effects of RT, that this will stunt the progress that dad has made, leaving him worse off than he is now but stopping the tumours rate of growth for a little while.

What are the known cases of someone dealing with a head injury coupled with a tumour.

Prior to this, my dad was a strapping strong figure of a man, who had served in the NHS for over 30 years. This whole nightmare has left him vulnerable, forlorn and at times lost. We break our hearts everyday and night wondering what is best...
What if he recovers from the injury only to realise that we never gave radiotherapy a shot?

Any information or insight would be greatly appreciated.

brainman · Last edited by brainman on Thu Aug 14, 2008 6:02 am; edited 1 time in total

Oh Bhoycer, I read your post soon after you posted it and have been thinking about it since then. What happened with your father should NEVER have happened Mad

. In my humble opinion, the emergency room and GP were grossly negligent in not doing an MRI or CT as soon as he had his first seizure. I know this might be harder to get in the British healthcare system but still... I really to feel angry when I think something could have been avoided if only hospital and doctors would do their jobs.

As you can read in my story (links in my signature block) I am a long term survivor of a glioma. I did have a recurrence in 2005. At that point it was a Grade III. I had surgery followed by 13 weekly steriotactic radiation therapy treatment. As of my last MRI (Feb '08 ) I still have no evidence of disease.

As for prognosis, I alway tell people that if my original prognosis had been right, I would have died at least 5 years ago. I do like to know my prognosis but only in order to set realistic goals for the things I still would like to do with whatever time I have left. Assuming for a moment that your father does only have 2-3 years, what does he want to do with that time? I know it is probably too early to very be thing straight. When I was first told, I remember having this overwhelming felling that all of my expectation for life had vanished; I had no future, only the present. However, eventually I realized that I could spend the rest of my life dying or living.

I hope you father receives better treatment than the diagnosis process.

You and your father are in my thoughts and prayers.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

Bhoycer · New User Joined: 12 Aug 2008 Posts: 6 Location: Scotland

[quote="brainman"]Oh Bhoycer, I read your post soon after you posted it and have been thinking about it since then. What happened with your father should NEVER have happened Mad

. In my humble opinion, the emergency room and GP were grossly negligent in not doing an MRI or CT as soon as he had his first seizure. I know this might be harder to get in the British healthcare system but still... I really to feel angry when I think something could have been avoided if only hospital and doctors would do their jobs.

As you can read in my story (links in my signature block) I am a long term survivor of a glioma. I did have a recurrence in 2005. At that point it was a Grade III. I had surgery followed by 13 weekly steriotactic radiation therapy treatment. As of my last MRI (Feb '08 ) I still have no evidence of disease.

As for prognosis, I alway tell people that if my original prognosis had been right, I would have died at least 5 years ago. I do like to know my prognosis but only in order to set realistic goals for the things I still would like to do with whatever time I have left. Assuming for a moment that your father does only have 2-3 years, what does he want to do with that time? I know it is probably too early to very be thing straight. When I was first told, I remember having this overwhelming felling that all of my expectation for life had vanished; I had no future, only the present. However, eventually I realized that I could spend the rest of my life dying or living.

I hope you father receives better treatment than the diagnosis process.

You and your father are in my thoughts and prayers.[/quote]

Thank you Jim, it has been a terrible few months, the worst part being that dad really hasn't a clue as to what is happening, his brain injury means that he doesn't retain much information...we have told him about the tumour...but he forgets a day after.
We have been given different timeframes at each step of the way..each one becoming shorter and shorter.
Presently he is quite happy, has discovered youtube and loves singing to all his fav songs. I look at him and think should i enjoy him as he is for a few more months or insist upon treatment which guarantees no cure or success. My dad has always been strong and upbeat, he would do anything for us and us him...its not fair that effectively we have to play god and decide what is right.
Your also right about the time it took the scan to be arranged, i could let my anger for the NHS consume me or just let it pass...there is nothing that can be done about it now. This is where we are and these are the cards we have been dealt.
We have until Aug 21st to decide upon treatment..each day gets harder and harder.

brainman

You are a lot more gracious to your heath care service than I would be Smile

. But I do hear you. It would be easy to get consumed by anger and overlook that present situation in which you find yourself.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

ksplat

Dear Rebecca

I am so very sorry to hear about your poor Dad & what he has suffered, also thinking of you my Dear, how dreadful for your family to be put through all this.

My Bro was prescribed 6 weeks of Rads for his GBMIV but wasn't able to complete the whole course because of his bad reaction to it. Apparently, alot of brain swelling causing terrible seizures due to the RADS. My Bro completed 4.5wks of 6wk RADS & was basically rushed into surgery for debulking in May last year. Miraculously, he is still with us & this is 18mths since diagnosis of the tumour! We have been blessed & I share our experience to give you some hope with your Dad.

You do have a difficult decision to make regards treatment for your Dad. My prayers & thoughts are with you at this time. My Dad had a severe stroke when he was only 56 which left him brain injured, it was very hard for us to see the change in him.

Thinking of you.
Cheers, Angie.
_________________
Brother diagnosed with GBMIV Feb 07
Treatment: Radiotherapy, Temodal, Gliadel Wafers, Dexamethasone, Keppra, Dilantin, Clexane
Went to our Heavenly Father after a 19mth battle,, 47 years young.
23 Sep 2008
http://cancerforums.net/viewtopic.php?p=19227

"Without Faith We Have Nothing"

Mirrorsia · New User Joined: 15 Aug 2008 Posts: 1

Dear Rebecca,

I'm sorry this couldn't be more of a help. I'm much to young to know more than the basics about the stage four GBM tumor that devastated my family, and I was too young when it happened to remember the steps that we took to overcome it.

However, I can give you this. My father recently had an MRI and came back clean. That MRI marked the 10th year my father has lived, cancer free, since he was diagnosed in 1998 with a stage four GBM tumor.

I can promise that his prognosis was grim. Why and how he survived is a complete medical mystery. Nobody thought he was going to live. Nobody.

But he's still here, despite everything the doctors told us. So don't give up hope. I'm praying for you, and I wish you and your family the best of luck. I know it's not easy. It's really, really, unbearably hard. But don't give up.

Bhoycer · New User Joined: 12 Aug 2008 Posts: 6 Location: Scotland

Thanks Jim, I'm not sure I'd call it gracious.....I have a few choice words for the health professionals in question.
Hope you are well Smile

Ksplat, thank you so much for your message...i am so very glad you have been very fortunate 18months on. I am not too sure if we will be the same. We have until Thursday to decide on treatment, we are all at home with dad this weekend and have talked about nothing else but RT.

Mirrorsia, 10years....WOW!!!!!! Thats amazing...if only everyone was so lucky. Faith and hope play their parts, but (and call me a cynic) at the moment they seem very dangerous to me.

I think my opinion has changed in that I want dad to go for it now...we broached the subject with him on Thursday and he seemed to understand that he had a tumour and needed radiotherapy to stop its growth. (he is a paramedic and is familiar with the treatment and his mother recieved a course of it when she had lung cancer)

Dad said 'no pain no gain' and i believe him...he is a fighter and has had a few health scares in recent years which have required major surgery...from which he has fully recovered.

Thank you everyone who has taken time to write to me and share their stories Smile

Becca

Bhoycer · New User Joined: 12 Aug 2008 Posts: 6 Location: Scotland

Hello all,
So we decided to go ahead with radiotherapy. We have seen an improvement in dads memory, though he still has periods of confusion. We have also spoken at length with him about this treatment and he seems to understand. However we fall short of telling him that regardless of having this treatment the outcome is still not too good.
Dad has had the full 6 sessions of RT and that is all he will be getting. There has been no mention of chemo drugs.
I can't quite believe how good he looks and how there have been zero side effects....so far. Dad has come on leaps and bounds in the past few weeks. He remembers a lot more some good stuff...some bad, although nothing about being in hospital for a month.
I think though that we are all waiting with baited breath...where is the sickness and lethargy?!?.
Dads brother has been visiting from South Africa, ths has been such a good feew weeks..we have all eaten out, had a few laughs...been very (very) merry and gained about a stone in weight.
But he leaves on Friday and in some ways i think we will all fall back to earth with a bump and get back to the worry, lack of sleep and tears.
I decided to take time off work..it was 8 weeks ago that we were told we were looking at 3 months...so i decided to make the best of the time i could with him. But to look at him now ....there is no sign of this ugly thing in his head doing its work...he looks great, eats everything and takes the dog for a walk twice a day?!?!
I don't know what to think Sad

ksplat

Dear Becca
Well, this is good news for your Father! I acknowledge your feelings of doubt too. We are well aware of this insidious disease & know what we read about it. The info available is only a generalisation though & if he's doing well then I believe the tumour is not! Make the most of these good times you are sharing with him & your family. Take each day as it comes, that's all you can do.
Thinking of you & remembering you all in my prayers.
Cheers, Angie.
_________________
Brother diagnosed with GBMIV Feb 07
Treatment: Radiotherapy, Temodal, Gliadel Wafers, Dexamethasone, Keppra, Dilantin, Clexane
Went to our Heavenly Father after a 19mth battle,, 47 years young.
23 Sep 2008
http://cancerforums.net/viewtopic.php?p=19227

"Without Faith We Have Nothing"

brainman

Hi Becca, just checking in to see how your father's treatments are going.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

Bhoycer · New User Joined: 12 Aug 2008 Posts: 6 Location: Scotland

Hi Guys,

Sorry not been on for a while!
Well we have had a hectic few months, thats us in to month three of diagnosis.

Dads treatment..well all six shots went well and to date there have been no adverse side effects and to a certain extent we have seen an improvement with the brain injury too. That said dad is still greatly confused and if anything a little vulnerable which is distressing to see...it now takes him four attempts to make a cup of tea after checking that he has everything and in the right quantities.

We are due to go back to the hospital next week where the consultant and radiologist will meet with dad. Im going to bring up the option of chemo drugs as dad has not been given any and from what i have read up on GBM4 its most aggressively treated with both RT and chemo...i just feel that in a way they have written my dad off.

I took time off of work to be with dad as i though we wouldn't have him for long...that was 8 weeks ago and now i need to get a new job! My contract wasn't renewed and the last thing i want to do is interview for positions..but in a way i want a bit of my old like back - as selfish as that sounds, I miss my old routine.
But more than anything i miss the chats with my dad and the reassurance he used to offer me when i was down.
I just can't express enough how much i miss him, and as bad as it sounds i know he is still here with us, but i feel like i havent spoken to him properly in months.
Just feeling a bit low right now.

Love to all, I hope everyone is doing as best they can

Becca

xx

brainman

Hi Becca, it is great to hear from you. I am very sorry about how complicated and difficult your life and your father's life are right now.

I totally understand your your desire for some "normality" back in your life. It was especially hard for me to find that when my father was so sick with his cancer. I think that a lot of MY problem was just adjusting to the fact that my father had become so dependent. I still miss him, especially Saturday afternoons when we used to enjoy listening to the Opera on the Public Radio station.

I too found support, refuge, and routine in working... that is until my own cancer recurred.

As always, you and your father are in my thoughts and prayers.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

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