Brain tumours

A place for people affected by brain tumours or brain cancer to support one another, ask questions, and share their experiences.

My Dad has a grade 4 glioblastoma...need insights, experiences, anything

Posted by

Hi everyone, new member here. 

My 60-year-old dad had a brain scan in late September and was told that he had a primary brain tumour, and that it was operable, but not much else. He had a craniotomy last Friday (8th November), which went fairly well aside from a seizure afterwards, and we were feeling generally positive about it as they thought they'd managed to get most of it out apart from a few small areas.

Unfortunately at the follow-up appointment today they told him it's a Grade 4 Glioblastoma and that the survival rate is somewhere around 15%. He's going ahead with radiotherapy and chemo as soon as the surgical wound heals, but has basically been told that it might not work (by the sounds of things anyway, I wasn't at the appointment). 

Logically I knew this was possible as it's the most common type of brain tumour and I'd already done a little bit of research, but it feels both unfair and ominous that the most common type is also seemingly the most deadly. I keep reading that it's "The Worst Cancer!!" (TM) so I don't know whether to be optimistic that, as they got the bulk of the tumour out, there's less to deal with, or be terrified about the fact that the odds are statistically stacked against him. 

I also really don't know what to expect as he's still pretty much "fine" at the moment (luckily) - he had a lot of confusion and behavioural changes before the scan in September (it was an emergency scan as he was acting so strangely), but since being put on steroids that doesn't seem to be so much of an issue. No headaches, no major mobility problems, nothing that would appear out of the ordinary for him to me observing.

But I've read so many stories of GBMs basically going from 0-100 in a few months and people deteriorating extremely quickly that I'm on edge with every phone call I get from my family. The only cancer in my family was my mum having a melanoma removed a few years ago and being totally fine afterwards, so something this serious is completely alien territory to me. 

I don't live close to my parents and we've never been super close emotionally either, so I'm struggling to cope with this emotionally. For various reasons I can't stay with them where they live or even visit more often than once every few weeks. Not only do I feel hugely guilty about this (my sister is around a lot but we have different dads so I can't help feel bad that she's doing what I can't, as stupid as that sounds), but it's really hard to assess the situation and find out how things are day to day when I'm not around. My anxiety and general mental health issues are also going into overdrive and I'm concerned I'm going to cope even worse as things progress. 

I suppose I just want some general comfort, reassurance, experiences, stories...really anything that will help stop me sitting up until 3am every night unable to stop speculating about how soon he's going to die. 

Sorry, I know this is long, but I just needed to vent to people who might understand. Thanks in advance. x

Posted by

Hi Dumborat16, Firstly I'm so sorry about your Dad, I too am in a similar situation with my Dad who was diagnosed with GBM the end of July, no surgery offered and just short palliative chemo and radiotherapy.

There is a Glioblastoma sport group on here you can join, I've found that helpful and informative. This aggressive cancer is such a beast, it also varies person to person how it affects them etc so it's difficult to judge timescales etc. 

Unfortunately my Dad appears to be in the final stages, just 15 weeks or so since diagnosis. He has frontal lobe tumour. 

It must be difficult for you not being able to be there and I think the main thing you will notice is how fast things can change from week to week. Please feel free to private message me if you want a more in depth chat, I'm happy to share our experience with you. 

Please take care of yourself x