Glioblastoma stage 4 after surgery

Hello everyone. I've been reading situations on here and I absolutely feel your pain. What I read is harrowing and very moving, yet inspiring. Thank you, sharing your story, it has helped me immensely.  

My situation - On 13.02.20,  my dad got confused and acted oddly all of a sudden, so we got him to A& E. A mass on the brain was found that day. He was kept in hospital for a day or so, he was discharged following a CT and MRI scan as the steroids were fast acting.  He picked up in the days to follow. Dad was at home whist we waited to see the Neuro Specialist, who would confirm dad's diagnosis and tell us the course of treatment. At the appointment, the Specialist said that dad had stage 3-4 Glioblastoma. As a matter of urgency they operated. We are fortunate enough to live near incredible surgeons and staff. He had surgery on 09.03.20. He looked remarkably well after it. No seizures, loss of movement of limbs and no further speach struggles. No tubes or distressing sights after surgery. 14 hours after surgery , he was walking about. We knew it was impossible to remove it all, so I panicked about how much they could remove given how well he was .We have got the results now. Less than a third could be removed. It's grade 4 after surgery . He met with the Radiotherapy Oncologist 2 days ago, they will do radiotherapy for 3 weeks,  He'll start it in just over a weeks time. So I have read up on it all again.  ( keep reading, knowledge is power they say? ) I'm terrified that radiotherapy could have an adverse affect and end up speeding up symptoms, thus reducing his life expectancy. But he wants to try. As it stands,  he has 9-12 months left, that's the prognosis given, only with surgery and radiotherapy. Things have been even harder due to the Coronavirus, my mum has health issues too, they're both over 70 and are currently self isolating. I'd love to be there more but I'm prevented as must  minimise infection risk. I'm making them home made meals ( shoving there 5 a day in a cottage pie etc, trying to keep them well ) and keeping in touch via the door or on the phone. I feel guilt. We can't make memories as I can't be in contact or do much with my parents - before he may get very ill with radiotherapy . My dad has graciously accepted his prognosis, he's been amazing.  I'm panicked. Fear for the future as dad may loose his speach and mobility. I have read many people don't feel pain ???  Please reassure me  ! My heart goes out to you all in a similar or the same situation. Wishing you strength !  We're stronger together. xxxxxxxxxx

 

  • Hi there. I can sympathise. My mum also has a Glioblastoma Grade 4 which they finally decided to operate on back in March 2016. I think there was a bit of dithering on their side as to whether it was malignant or benign. In any case they thought the Op had gone well but unfortuantely she had a really bad seizure in around October 2016 time and after doing another MRI scan found that there were some more tumours appearing. She was put on a plan of Radiotherapy and Chemo which did appear to have some success and kept them at bay but alas now they have now stopped the treatment altogether as it is no longer having any effect. She is now unfortunately in a Care Home which they are allowing me and my sister to go and visit as she is classed as 'Terminal'. She has deteriated qutie badly in the last 2 weeks to the point where she has hardly any mobility and has to go around in a wheelchair. We're grateful that she was able to be kept alive for these past few years as it is over 4 years since the Op which is way above the average by all accounts. She was 67 when all this start and now she's 71 and a hlaf which for me is still too young she was so full of life before all of this happened. She's never smoked, not been a big drinker and never done anything in excess it's so cruel that she wont be with us in a few weeks i will miss her till the day i die  when she's gone.