Hello, new. Have a low grade glioma, tbc what type exactly

  • 11 replies
  • 54 subscribers

Hi there

This has all happened a bit suddenly, it feels like - I had an MRI on Friday, and I knew there was something up - they kept me in for ages, did a contrast scan which I wasn't expecting and asked me about my consultant. He rang on the weekend and got me in this week urgently. It turns out I have a golf ball sized low grade glioma - they think either oligodendroglioma or IDH mutant astrocytoma. I am going to see the neurosurgeon next week. I am really scared. I have a one year old daughter and a husband - the thought of leaving them fills me with horror, so really hoping they can treat it well. I'm on seizure medication now - Keppra. The only symptom I was having was weird focal seizures on my right side.

Anyway, just reaching out and saying hi to everyone - it's a comfort there are people going through similar things here.

  • Hi Joolaboola

    a warm welcome to the online community. So sorry to hear about all that you are going through. Not knowing all the facts is far scarier than knowing exactly what's going on so please try to stay positive and steer clear of Dr Google - he's a scary dude!

    Hopefully your neurosurgeon will be able to give you some answers next week and at least outline the plan. Can I suggest that before that appointment you write down all your questions, fears/concerns and take those notes to the appointment?  They can act almost like a script and help to keep you on track and make sure that you don't forget to ask something that's important to you. There's no such thing as a daft question either. It might also be an idea to take someone with you to the appointment, Those first appointments can feel quite overwhelming.

    I've been supporting my husband through his stage 4 brain tumour journey since his diagnosis in Sept 2020 so can empathise with where you are at here.

    This is a safe and supportive space so please reach out here anytime. There's always someone around here to listen who gets it, someone to hold your hand and to offer a 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. Stay strong.

    love n hugs

    Wee Me xx

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

  • Hi Wee Me

    Thank you so much for your kind words. I am very sorry to hear about what you and your husband are going through. I have started a list of questions.

    If anyone has good suggestions of questions for these types of tumours, I'd be grateful to hear them - please do comment.

    My husband is coming with me, thankfully. I think I'll feel much better when I know plan and timing of next step after seeing the neurosurgeon. My neurosurgeon has been really good, and even the GP has checked in on me. It's comforting but also a bit scary, as it reminds you it is serious!

  • Hi Joolaboola,

    Sorry to hear about your recent diagnosis, I was diagnosed with a low grade Glioma back in April after having two seizures in the same night - one in my sleep (actually fell out of bed mid-seizure and awoke to 2 paramedics standing over me) and a Grand Mal seizure as a clinician was asking me cognitive thinking questions upon arrival at hospital.

    Had a CT scan where they found a shadow then the MRI with contrast, told me it was a low grade Glioma - 2 inches in diameter (around the same size of a lime).

    I didn't even know what a Glioma was until I googled it, anyway mine is a stage 2 Oligodendroglioma, they think I had it for close to 5 years.

    Had the operation to resect it - they got around 70% of it, the rest would have been too difficult to remove, still needs radiotherapy and chemo.

    I am the most squeamish person in the world, at least I was - never had major surgery or any sort of operation in my 38 years on this planet until the brain tumour operation and I was terrified but the op couldn't have gone better apart from the fact they couldn't get all of it.

    As scary as it is, try not to panic, these people are amazing at what they do - my operation took 7 hours, incredible for someone to keep their concentration for that long when someone's life is in their hands.

    Remember, they do this sort of thing pretty much everyday, it's what they are trained to do.

    Good luck!

  • I had a 4cm tumour of the same type! In 2016. And years on from the original prognosis, I'd be a liar if I didn't say its come back. This time from a Grade 2, to a Grade 3. I've undergone 6 sessions of radiotherapy and currently due my 3rd session of chemotherapy.

    Although the consultants said to me, it will lay dormant for a while, one thing which is important to remember, is live life to the fullest. Take each day as it comes. 

  • My story is the exact same as yours. My daughter is 2 and I just fear that she’ll lose her mummy. I’m wondering how you’re getting on and do you have any advice for me?

  • Hi Lisa, my heart goes out to you as I know how you feel! I am now two weeks on from a craniotomy after several delays. They did a fantastic job in surgery - got more than 95% of the tumour and have now confirmed it is grade 2, IDH mutant. I did a 9 hour surgery awake, which sounds scary, but the face of my daughter just spurred me on. I will start radiotherapy soon but may not need chemo. I got so many warnings about speech and to a lesser extent movement, but I basically had no problems. The main issue post-surgery is tiredness, which is no joke - you need to rest to heal. Surgeon told me he feels very positive about my prognosis now, so hopefully in daughter's life for a long time. I wish you the best, and always here if you want to chat x

  • Thank you - this really made me feel better when I read it. Hope you are doing well.

  • Thank you - this will probably be me down the line. All we can hope for is big gaps and better treatments! Wishing you the best

  • Thank you for your reply. I’m not scared of surgery at all. I’d do anything to have my life for me and my family. I’m really pleased you’ve had successful surgery and it sounds like you’re feeling more positive. I’m sure I will reach out again soon. Lisa x 

  • Hey! I'm nearly at the end of my chemotherapy. After a grade 3 tumour. 

    So nice that we can help each other and share, in our experiences. 

    I had my operation 6 years ago originally, but unfortunately it came back again. But still have to look on the bright side. Don’t mean to scare you, but every 3 months mri scans. But when it gets toBlush grade 3 tumour, they can only keep it Dormant. I'm sure the consultant will explain to you. Wish you all the best as well, for being an inspiration to me and all the others on this forum! Blush