Glioblastoma IDH WY

Hi 

3weeks ago I was admitted to hospital with headaches and weakness to my left side. 
To cut a long story short I has surgery to remove a large cystic lesion. They removed most of it but could not operate on all of it due to the location. Subsequently told it Glioblastoma WHO GR 4 IDH WT. 

Got my first oncology appointment next week and am unsure on what to expect. Anybody else got any experience of the tumour and any tips on trying to cope with the diagnosis. Any info or advice would be really appreciated whether it be dealing with treatment side effects etc

many thanks in advance 

Parents
  • Hi

    i had a frontal lobe tumour removed seven weeks ago, I had my appointment today for my radio mask made and will be starting radio and chemo in next two weeks.

    my tumour was found unexpectedly as they thought I had had a stroke and seven hours later I was in surgery for seven hours.

    regarding first oncology appointment please don't be worried and take a pen and paper with you to make notes and ask as many questions as you feel you need to, don't rush and if possible take a family/ friend with you.

    my tumour was a grade 4 , but I didn't want to know prognosis or which type of tumour, just take one day at a time. Take advice and help from Macmillan nurses at hospital they are brilliant. Also don't over think the illness and concentrate on other things keep busy but don't overdo it. Take all your medicine if you are on any I was on steroids for swelling and take your treatment plan one step at a time. All the best and you everything goes well for you. Stay strong.

  • Thanks for the advice. I too had this unexpectedly. Was working on a ship. Headaches started and blood pressure through the roof. Ship came in to Bergen to get me off. A week later I was operated on. Got most of the tumour out and luckily I'm back to normal for now. That's one of the problems in that I feel as healthy as before. Hard to deal with this growing in my head. 
    im hoping I can take my wife in for my appointment but the instruction I've been given says I need to be on my own due to COVID but I will call them nearer the time as the restrictions lift on the 19th. 
    take care and once again thank you for reaching out

  • Think headaches are the main symptom of brain cancer. 
    far as I am aware for first oncology a family member can attend with you to take on board the information given by consultant,a lot to take in and deal with.

    I think the treatment is worse than the illness itself but stay strong , you have to get worse before you can get better, baby steps.

    Did you have memory problems or balance problems prior to surgery ?

    How is your wound healing?

    All the best

  • Hi Jh10

    thanks for the reply.

    prior to the surgery my brain really wasn't working right. Struggled to do basic tasks at work and had weakness down my left side. First noticed that when I had trouble tying my shoelaces. 
    since the op I have no symptoms and my wound has healed really well. People find it hard to believe my diagnosis as I just look and feel the same. Well apart from a very neat scar on my head which I can't hide as im bald ! 
    take care

  • I also struggled with left side weakness and numbness and crippling migraines which normal medication would not shift.

    luckily I can hide my 19 staples scar with my hair, currently undergoing chemo and radio 

    would wish this illness on anyone

    i also feel fine post surgery and look well just a shame we can't see what's going on inside but actually maybe I wouldn't want to see!

    stay strong and hope everything goes well for you

  • Thanks suzy11. How are you finding the radiation and chemo?

    I saw my oncologist yesterday. Not much poisitives apart from I look well, I'm young ( first time in a long while I was told I'm young ) (55). 
    she has said I will hopefully start the same treatment in 2-4 weeks. She said I will be pushed to the top of the list. I'm already 4.5 weeks post surgery so I fear the longer I wait to start the treatment the worse my chances are. It seems everything is going against me at the moment but I guess most people on here will feel the same.

    Thank you for getting in touch and I hope your treatment goes well. Take care

    ld I'm young ! )

Reply
  • Thanks suzy11. How are you finding the radiation and chemo?

    I saw my oncologist yesterday. Not much poisitives apart from I look well, I'm young ( first time in a long while I was told I'm young ) (55). 
    she has said I will hopefully start the same treatment in 2-4 weeks. She said I will be pushed to the top of the list. I'm already 4.5 weeks post surgery so I fear the longer I wait to start the treatment the worse my chances are. It seems everything is going against me at the moment but I guess most people on here will feel the same.

    Thank you for getting in touch and I hope your treatment goes well. Take care

    ld I'm young ! )

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