Inoperable Stage 4 Astrocytoma

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Hi all. I’ve been on a bit of an emotional rollercoaster over the last few weeks as recently diagnosed but I’ve now been told that I have Stage 4 astrocytoma (idh mutant and methylated). I have had mixed views on surgery from the nhs team but went for a second opinion in London (private) and was told today that they felt that the risks of surgery outweighed the benefits. My tumour is large, diffuse and deep into my ventricles (tumour right temporal lobe). I was anxious about surgery anyway and losing quality of life as I am currently pretty “normal” getting out and about each day - minimal symptoms just on Dex and Kepra. I am going to start chemo and RT as soon as we can. As a mum to three young kids I am very scared about this all however and what it means for my prognosis as most people seem to have surgery first. Desperate for as much time with them as possible. Has anyone been in the same situation as me? 

  • Hi Devonsands

    a warm welcome. So sorry to hear about what you are going through. Something to remember is that everyone is unique so just because some folk have surgery first it doesn't mean everyone does. 

    Astrocytomas are not something I know a huge amount about. I have been supporting my husband with the stage 4 glioblastoma journey since Sept 2020 so can only comment from that experience. I looked astrocytoma up on the main website and there's some info there that may help  - Astrocytoma | Macmillan Cancer Support

    Scary as it is, you have to put your trust in your medical team here but can I suggest that you write down all your questions/fears/concerns no matter how trivial they may seem and take those notes to your next appointment, Your medical team are the ones best placed to give you answers based on your scans etc. 

    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 offer that virtual hug when its needed. You're not alone. We're here and I am confident that some of the other members of this group will be along shortly to share their words of wisdom with 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 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

  • Thanks for your kind message and positivity. Stage 4 astrocytoma is also known as GBM I believe?

  • HI

    I believe so. I did some more research for my own understanding after I replied to your last post. I still stand by what I said. Talk to your team and take this one step at a time.

    We were given a  scary prognosis back in Sept 2020. They told us my husband had 12-15 months. Those 15 months "expired" in Nov 2021 and he's still here. He's a marathon runner and last year ran a total of 2800+ miles including two marathons. I've come to understand that the timescales Drs quote are best guesstimates based on published averages. No one is average. We are all unique.

    Please stay positive. Take this one step and focus on what you know not the "what ifs".

    Sending you lots of love and light and positive energy

    Wee Me xx

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

  • Hi Devon sands, I have just finished fifteen sessions of radiotherapy with TMZ for GBM.  Despite all the dire warnings about side effects and so forth few people who met me could guess that I was under treatment.  The first two sessions left me nauseous but with proper information on how to use the meds it was quickly under control and I have felt vaguely nauseous only once or twice since.  Fatigue is a problem particularly with young children I would think, just rest whenever you can I suppose.  Burnt skin on my scalp was easily treated with Flamigel and there was no severe hair loss either.  
    Think pretty thoughts and try to have a nap while the therapy is done, Best wishes for a speedy return to your normal self.

  • Thanks so much for the message!

  • Really good to hear your story as I’m just about to start my treatment and trying to stay positive 

    someone I know been through same past year now back at work