my wonderful dad

I am so confused. After reading about this awful cancer and hearing other people's experiences it would seem the prognosis is different in different countries. Canada state 2-3 years. Is this because they have better treatment than us in the UK? The Wanted singer was told 12 months but is still here (after watching his story on This morning). His wife also explained how his treatment was immediate. He had his mask made & treatment started the very next day.

I have been told by my dads consultant that they have a big meeting to decide what treatment and where, then another week later a mask is made, then another week later radiotherapy would've started. My dad was offered NO treatment. He deteroiated so fast after being sent home from our local hospital (where he was ok, feeding himself, walking up the coridoor with my mum etc) so after seeing my dad on a zoom call they decided to not bother with radiotherapy as he was bed bound now. My dad from diagnosis lasted exactly 3 weeks. 

Yet on UK websites about Glioblastoma 4 it states the prognosis is about a year. I am so confused. My dad showed little symptoms apart from memory loss and started to not be able to get his words out OCASSIONALLY. So no immediate concerns for a scan. It was only when my mum noticed he was getting worse & could not remember to do his insulin anymore or put his jumper on himself she took him back to GP who looked into his eyes and sent him up to A&E for scan that night. 

Can anyone shed any light onto why my dad had no treatment or showed hardly any symptoms and literally died in front of us??

  • Hi Lolly77

    so sorry to hear about your dad and I can feel your frustration in your words. I can also empathise with you completely here.

    My husband was diagnosed with a GBM4 in Sept last year. Initially we were told 18-24 with surgery and treatment or 3 months with no surgery and no treatment. After surgery that changed to 12-18 months then dropped to 12-15 months. We stopped asking for timescales after that. We're in month 14....the clock's ticking.... but so far he's still physically fit. Mentally he's slowly slipping. (His tumour was in the area that controls speech, language and understanding) He had 6 weeks of oral chemo/radiotherapy and then declined all further treatment - a decision I have to respect.

    It would seem that the timescales do vary widely but it appears to be dependent on a lot of factors- age and fitness of the patient, location and size of the tumour, ability to remove it or debulk it.  I'm no expert but have read up extensively on this since my husband was diagnosed. He's 52, physically very fit and the average survival for his age is noted as 14.2 months. That drops the older folk are. Only 5 % of those diagnosed live for 5 years. Only 25 % of those diagnosed see the first anniversary of their diagnosis. It's poor odds no matter what way you look at it sadly.

    Personally, I've come to think a lot of it is down to luck. It's cruel and its horrible and so hard to get your head round. We went through this journey 28 years ago with my mother-in-law. She was 58 at the time, swam a mile a day, didn't drink or smoke. She lasted 4 days after the biopsy surgery to confirm what kind of brain tumour she had- we never ever found out what kind it was. At the time it didn't seem important.

    Now I wish we had....just in case this is hereditory.  I have two kids (21 and 23) who are slightly anxious about what their own future may hold despite the reassurances from the neurosurgeon that in this case its just sheer dumb luck that both my husband and his mother developed primary brain tumours in their 50s. 

    Not sure if this has helped in any way. I hope it has.

    Sending you a huge virtual hug. Stay strong.

    love n hugs

    Wee Me xx

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