Newby - Low Grade Brain Tumour

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Hi all, newby to the site,

I've recently been diagnosed with a low grade brain tumour which is around 5cm in size behind my right eye, had been having symptoms for a while, racing heartbeat that I could hear in my head, dizziness, strange smell occasionally, this all culminated in me being found on my bedroom floor having a seizure then upon arriving at Royal Preston Hospital I then had a second seizure.

I spent 4 days in hospital where after a CT then an MRI scan I was told I had said seizure.

Had the appointment with a surgeon who showed me the scans and told me he wanted to operate in the next few weeks to cut it out.

I'm absolutely terrified I'm going to die (I'm only 38 - just, as of yesterday), worried as to how he's safely going to be able to safely cut it out if it's directly behind my right eye.

Has anyone here had a similar experience?

  • HI 

    a warm welcome to the group. Sorry to hear about all that's been going on. No wonder you feel terrified. That's a lot to take in.

    I've been supporting my husband through his stage 4 brain tumour journey - an entirely different journey- but can empathise with all the emotions you are going through. 

    Please focus on what your doctors have actually told you and steer clear of Dr Google (He's a scary dude!) Everyone is unique and each tumour impacts everyone differently so your own medical team are the ones in the best position to give you sound advice. Take this all one step at a time. 

    Can I suggest that you write down all your questions, fears/concerns before your next appointment and take those notes with you. They will help to keep you focused and ensure that you don't forget to ask something that is important to you. There's no such thing as silly question here either..

    I found some generic information on the main website that might help answer some of your questions. Brain tumours | Macmillan Cancer Support

    This community 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 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.

    I'm confident some of the other members of this group will be along shortly to share their words of wisdom with you too.

    For now, 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 and thanks for the reply Wee Me, sorry to hear about your husband, hope you're both doing ok.

    The hospital rang the other day, my next appointment will be the day of the operation, I'm absolutely terrified.

    They did ring back this morning to tell me my MRSA swabs had come back positive but they'll be making a decision as to whether to go ahead with the op on the morning of the aforementioned date.

    The person operating on me will be the consultant I spoke with at my last appointment, just worried as to how he's going to get to the tumour when it's in the right temporal lobe, at the front of my brain directly behind my right eye.

    I would have asked him about this at the last appointment but everything went out of my head as soon as he showed me the MRI scans, was just in shock.

  • Think positive. Trust your medical team to take the best care of you. Stay calm and take this one step at a time. 

    Remember you can reach out here anytime. We're here to support you. You're not alone.

    Stay strong.

    love n hugs

    Wee Me xx

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

  • Well I'm back, on the 8th I had my operation to debulk my brain tumour and undergo a right temporal lobectomy.

    I never knew I was agreeing to the latter and only found out about it upon being discharged upon reading the discharge notes, thought I was only agreeing to have the tumour removed/debulked.

    Was under for 7 hours and was in pain when I came around but had the morphine waiting for me when I woke up.

    The worst part was the recovery to be honest as I was really unsteady on my feet during the 3 days I spent recovering after the op, was there for 4 days then discharged on the 12th June.

    The drain they inserted into my head to drain excess blood was kind of scary and having it pulled out of my head while awake a few days after the op was pretty painful.

    All seems to have gone well though I can hear a clicking noise in my head though I'm told this is my brain healing, though I also hear a kind of creaking noise in my head - I think it's coming from where they took part of my skull out/screwed it back into place with screws and metal plates.

    I also have a sort of squelching feeling in my head whenever I lean forward which is rather uncomfortable.

    Still a bit unsteady on my feet but glad to be back home, just have to wait for the test results of what they cut out of me that will hopefully confirm it was benign, and the results of the last MRI scan I had before being discharged to confirm whether or not they removed all of the tumour.

    Regarding the lobectomy, I believe that's a removal of the whole temporal lobe where the tumour was situated from what I have read, is that correct?

    Furthermore, shouldn't they have told me they were doing that to me?

    My memory isn't great understandably (even more so now) but I'm absolutely certain they never mentioned this procedure to me in the consultation/pre-op.

  • Welcome back.

    Glad you're recovering from your surgery. Be patient with yourself and give your body time to heal. Remember its been through a lot recently.

    With regards to the extent of your surgery that's really a conversation to have with your medical team. Can I suggest that you write down all your questions, fears/concerns and take the notes to the next appointment? If you use them almost like a script it will make sure that you don't forget to ask about something that's important to you. It's quite easy to feel overwhelmed in those early appointments, Please remember if you don't fully understand what's being explained ask for a clearer explanation. Doctors speak a medical language and its all too easy for them to forget that us mere mortals aren't as fluent in it as them.

    For now I'm sending you healing love and light and hugs

    Wee Me xx

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

  • Yes I'm getting tired a lot, struggling with the fatigue, I get up to go to the bathroom which is only 15 metres away and each time it feels like I've exerted too much energy as I start hearing my pulse or heartbeat in my left ear strangely, I also have the odd day where the fatigue makes me feel ill and even though I'm tired I can't drift off.

    Getting 7-8 hours sleep a night too but within 3 hours of getting out of bed I'm absolutely exhausted again and having to go back to bed.

    Last Thursday the consultant rang with the test results and the tumour is/was, as they thought, non-aggressive & benign, thankfully, however, despite thinking they had gotten all of the tumour out, the MRI scan I had before being discharged shows there's still a small piece of the tumour in there, he thinks it would have been too dangerous to remove anyway.

    Anyhow, I have to go back in around 2-3 months to have another MRI scan, presumably to see if it has started to grow back.

    Big relief to get through the operation and to learn that it is benign though bit disappointed that this doesn't seem to be the end of it yet.

    Thanks for your replies/help this far by the way Wee Me, I appreciate it.

  • Benign is a beautiful word. Glad the results were good.

    As for the fatigue - it'll pass. Be patient with yourself. Your body is still healing and that takes time.

    love n hugs 

    Wee Me xx

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

  • Back again, attended the hospital yesterday where they confirmed they had gotten most of the tumour but some remains, they also confirmed the type of tumour I had was/is either a stage 2 Diffuse Astrocytoma or a stage 2 Oligodendroglioma.

    I guess if I must have a tumour stage 2 is the end of the scale I'd rather be at.

    I can't really remember most of what was said as my memory is still shockingly bad however I have to have radiotherapy for 6 weeks starting next month and then chemo for several months after the radiotherapy.

    Was quite surprised I needed chemo given my tumour is benign.

    Altogether it will take almost a year to complete both treatments so that's me off work for another year but just trying to think of the end result - though he seemed pretty certain the treatment won't completely eradicate what's left but hopeful it will "extend my life by at least 10-15 years at least" were his exact words, kind of a scary set of words to use given it's a benign tumour.

    Getting horrendous back pain especially when getting out of bed in the morning, at first it was just the lower back where the kidneys are but the pain seems to be working it's way up my back, thought this might be down to the Keppra (aka Levitiracetam) I'm on but he says it rarely causes kidney damage and is probably because I've spent a lot of time in bed lately however I'm almost certain something isn't quite right.

    Anyway, onwards to the radiotherapy.

  • HI

    glad to hear you are doing ok. Benign is a beautiful word and if the treatment extends things by 10-15 years that sounds pretty good too. 

    Have you asked them to investigate the cause of the back pain?  My husband developed back issues but they were put down to the blood thinning injections he was prescribed as he developed post surgical blood clots in his lungs. He's been on Keppra for almost 3 years with no issues.

    Good luck with the radiotherapy. He coped really well with it so hope you get an easy run. Fatigue was the only side effect but that didn't kick in until week 4 and lasted for about a month after the treatment ended.

    Hang in there. Stay strong.

    love  n hugs

    Wee Me xx

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