Astrocytoma low grade stage 2

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I’m new  I’m Claire I’m 42 and have only just got my news so here I go sorry if this is a little all over the place. 

I’ve had seizures for the last 2.5 years and had a MRI back then and was told nothing was abnormal on my brain. The seizures were full tonic clonic seizures at first but after being reviewed by a neurologist (and having a full tonic clonic seizure in the actual office) I was told I don’t have epilepsy because it doesn’t look like that type of seizures I have I was told I had trauma issues and needed therapy. I have jumped through every hoop they have given me to get the help they told me I needed.. after a few months I felt I wasn’t being helped by the psychiatrist I was seeing and asked to see another. That doctor sent me for a MRI and there was what looked like a white matter lesion on the frontal cortex of my brain. Upon a further contrast MRI I have been informed I have a astrocytoma low grade (stage 2) I have an appointment on the 1st of august I have no clue what to ask them? Does anyone else know this particular tumour? 

sorry it’s been a day and I’m just having a major panic about everything I have no family to ask for help. 

I appreciate any help! 
claire 

  • Hi Claire11

    a warm welcome to the group. 

    First off....slow down, girl. Breathe.... One step at a time here. Being all over the place is totally normal so no need to apologise. Everyone around here gets it. We all have days like that for various reasons.

    Sounds as though you've had a rough journey to get to this point so well done on getting this far and for reaching out here. 

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

    I've been supporting my husband through his Stage 4 Glioblastoma journey since Sept 2020 but I do recall the overwhelming emotions of the early days. 

    I don't know a lot about astrocytomas so I have taken the liberty of looking up some generic info from the main website for you. Here's the link Astrocytoma | Macmillan Cancer Support

    There are no hard and fast rules about what to ask. At my husband's initial appointment (although his tumour/tumours are a whole different story) we met the neurosurgeon. He had already had scans that had told him there was a something and by the time we met the neurosurgeon we'd already had a call to say that they were skipping the biopsy phase and going straight to surgery to debulk his tumour. Everyone is unique here so your August appointment might not involve a discussion about surgery so don't panic here because I've mentioned it but bear in mind it might be an option offered. At our initial chat with the surgeon they talked us through what would happen and what the follow up treatment would be. A couple of weeks later, after the surgery when we had the follow up, again they talked us through the pathology then introduced us to the oncologist who talked us through what treatment would look like. We were given a lot of information and those early appointments can be quite overwhelming. You might want to consider taking a friend with you. Back to the questions - write down all the things about this that you are fretting about or worried about or scared about. Take those notes to the appointment and make sure you ask everything. There's no such thing as a silly question so the medical team would rather you asked it than went away worrying about something. 

    I'm sure other members of this group will be along shortly to offer their words of wisdom. Please take this one step at a time. Focus on the facts that you have been told and steer clear of Dr Google (he's a scary dude!). Everyone is unique here so just because one person experienced something it doesn't mean you will.

    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 hope this has helped.

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

    love n hugs

    Wee Me xx

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

  • Dear wee me, 

    thank you so much for your reply it means a lot. I’m so sorry to hear of your husband I can only imagine what your both going through. My prayers are with you both. 
    I’m actually seeing a neurosurgeon and a oncologist both on the 1st. I think maybe as a precaution really,  I’ve already had cervical cancer twice different types but still beat them both. 

    I think I’m just blindsided by this as I was originally told it’s MS. I  so wish doctors would fully make sure of something before telling you one thing and it end up being another. I get that they don’t know it all. 
    I had prepared myself for going forward with MS but now it’s this tumour I’m just blown away. 
    I will settle down the shock just sits with you for a while I thought myself and cancer had already done enough battles. 
    I’m going to try not to focus on the what ifs anymore and just take it step by step.. thank you for your kind words, this sounds strange but not having a mum anymore I think I just needed a mums advice and that is exactly what you have just done for me. I truly appreciate the time you took to reply and the link too. 
    your husband and yourself are in my prayers Pray tone1 

    a big hug back to you from me I will keep you updated on what they say. 

    thank you again you have no clue how much it’s helped me. 

    claire 

  • Hello how are you getting on Claire? Xx

  • Hi please ask anything as I’m on the journey with a grade three astrocytoma but a cdkn 2a/b HD. My treatment is ongoing and I’ve kept a blog on my history. And please do ask anything