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Hello. My son had a seizure out of the blue in May 2023. He was taken to hospital and blood tests done. Nothing strange appeared to be wrong. It wasnt until September that he had a phone call from a neurologist who seemed very surprised that he had not been scanned. An appointment was made and he had an MRI. He rang me to say they had found something on the scan and were keeping him in. We drove up to him as he works away from home to be told he has a tumour and the team were meeting to discuss him the following week. (Doctors strikes)

A week later we met the surgeon who discussed options and my son decided on surgery. 3 weeks later 3rd Nov he had surgery to remove the tumour from his right occiptal lope.

We received initial results before Christmas with further testing to be done and got final diagnosis just after.

He has a low grade 2 astrocytoma. The thing we all seem to be struggling with is at no point did we ask or think about life expectancy as we got the impression that with removal and treatment all would look good. We were told it would come back after removal but we did not expect an 8-10 year prognosis. Thank you for reading

  • Hi Weja

    a warm welcome to the online community and thank you for sharing your son's and your story.

    I supported my late husband through his stage 4 brain tumour journey so I can empathise with your struggle. Hearing any cancer diagnosis, especially I feel a brain tumour one is terrifying and totally overwhelming so don't beat yourself up for not asking all the questions at the outset. It's such a huge thing to process.

    All I can suggest is that you take this journey one step at a time and try not to focus too much on the prognosis. Timelines in my experience are scary things but at the end of the day they are best guesstimates based on published averages and no one is average. We're all unique.

    My late husband blew every timeline we were told out of the water. We were initially told in Sept 2020 that he had 12-15 months. In the end he got 3 years 2 months and 1 day.  

    This is a safe and supportive space so please reach out here anytime. There's always someone about to listen who gets it, someone to hold your hand and someone to offer that virtual hug when its needed. You're not alone. We've got you.

    It’s always good to talk so please remember that you can also call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.

    For now though I'm sending you a huge virtual hug and lots of positive energy. 

    love n hugs

    Wee Me xx

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • I’m in the same boat, except mine is a grade 3, 60 % removed. I’m blogging my journey on my profile. Everyone’s journey though is different and a grade two is a very slow growth type, prognosis is always like an arrow in the wind; rarely on target. And I’m sure if they have removed 99% and with him being so young; then his chances are really good.

    I imagine he’ll have MRI check ups and possibly follow up radiotherapy and maybe chemo but hopefully he won’t need them. Be positive, and strong for him; I know it’s not what you want happening to your son. If you think of the bad then it can’t help anyone (I know it is hard-especially as the one with it).

    Take it in stages, and show him he has support (obviously as your a loving,strong family).  And no googling it (was my mistake as it swallows your perspective Nerd and leads you down wrong paths). He is in capable hands and they know the best path forward.

    I hope I didn’t come across wrong but if you want to ask me anything please don’t hesitate. As I’m sure everyone here will will. Wee Me is an amazing help