Grade 4 Glioblastoma Diagnosis

[Shavey83]

My partner was diagnosed with a grade 4 GB in mid July and sadly passed away on 4th September.

We’re just so shocked and struggling to come to terms with how quickly she deteriorated.

She attended A&E, first in May following episodes of forgetfulness, feeling weak and shaky but was told it was anxiety related. A month later she had numbness on one side of her body and thought she was having a stroke, developed tremors on one side of her body in the ambulance. Again was dismissed as anxiety. Another trip to A&E start of July, water infection diagnosed, despite arm and leg tremors. Back 2 days later where the doctor wanted a head scan, just to make sure they checked everything out. Then bang, we were told they’d found a lesion.

All throughout this time her ability to stand, talk had significantly declined. Admission to hospital and she declined so quickly. Neurosurgeon showed us the scan, a 5cm tumour on the left hand side, had spread along the corpus callosum and developed a second tumour in the front right lobe. A decision whether to operate or not was put on to us as a family, initially!!! Before being taken off the table a week later, after some further discussion.

From then it was just 5 weeks before Zoe sadly passed in palliative care and we just cant believe how quickly things have turned our lives upside down. We’ve got no answers why or how and we’re just so lost 😔

[Tansi75]

Hi Shavey83,

Very sorry to read about the loss of Zoe, the Brain Tumour Charity might be a useful organisation to contact for support in your time of deep loss and need, to help you to find some answers to your questions.

I know from my own experience of losing my elder brother to his grade 4 GBM in 2010 that nothing in life before the diagnosis can prepare you for the impact of such a traumatic event.

One thing you can all do at the moment is to spend time together remembering all the wonderful times you had with Zoe to get you through the darkness you are going through. There is light at the end of the tunnel, together you can all get through this by sharing memories, as long as you remember and talk about Zoe, she will always be with you.

Regarding the problems you faced trying to get Zoe correctly diagnosed, it is all too familiar a story for many families who have to go through the same process. Which is why I do believe that brain tumours are the forgotten cancer. I appreciate that this probably doesn't help you all at the moment. But hopefully it may enable you to put somethings into perspective.

The important thing is that you all tried to do your best for Zoe, but events outside of your control e.g. the failure of health care professionals to complete a fast diagnosis on the first day you went to A&E in May.

This might not be the right time to make this suggestion, but one thing to consider, when you have got your lives back in balance, would be to have Zoe's story told via the Brain Tumour Charity, to highlight the need to improve early diagnosis of brain tumours via A&E.

My thoughts are with you all and I wish you the very best for the future and obtaining answers to the multitude of questions you currently have.

[Manty54]

I’m so sorry to hear that, my husband also passed away in 3 months with 2 craniotomy. This disease is brutal. I’m still shocked after 7 months. I wish we never bothered him to go true surgery. His tumor was multiracial there were 3 tumors, and really fast growing. Sometimes you want to do what is best and the. You regret it. I’m thinking what if he hadn’t done those surgeries and only did the radiation and Chemo? Any how there a lot of questions with no answers but I’m happy he is not suffering anymore. My kids and I miss him all the time but there is nothing we can do for can’t bring him back. I wish I had that power. May God give us strength to go through life and make them happy. God bless!

[NJRV]

Dear Shavey83,

I am so sorry for your loss, I am feeling your same desperate shock too.

My beloved mother passed away last 26 September, 9 months after being diagnosed with grade 4 GB. She was a healthy lady which few weeks before being diagnosed was perfectly normal, even cooked my favourite milky pudding. The last few days of her normal days her left side didn't move, we thought it was a stroke, all of this happening between Christmas and new year. After imaging results were told to go to Emergency where she had a craniotomy on New Years eve. After the biopsy results it was decided to put her on palliative care only with no chemo or radiotherapy. I was desperate, you may assume there would be a treatment, but not for this. That was hard for us but later understood chemo and radio would have done more damage to her body.

So my mum was relatively ok until April, could recognise us but couldn't walk, In May she wouldn't talk and slept most of the time. From May to September she slept all the time, she was fed tiny portions of food which took nearly 3 hours to finish. At the end, developed an unmanageable bronchitis. We will never know how big that tumour grew, where did it go, why did it happen to her, nothing. Doctors only kept her confortable because there isn't much they can do. This is the worst cancer ever, a total mistery, we can't understand how my mum, a healthy and clever lady got it. She was the leader in our family, now we feel totally lost. We can only think they are not suffering anymore. x