Craniotomy scar, brain tumour recurrence

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Hi, I’m looking for some advice, my uncle had a whole brain tumour removal from his cerebellum in February which was found to be secondary, they cannot find the primary so it’s classed as CUP cancer.  Unfortunately by April the tumour was coming back, he’s been relatively ok but since July is declining they are sure things are progressing, for the last few weeks he’s been complaining of quite bad pain and weird feelings at his scar site, we had a feel and look and it’s seems like at one part there’s like a a slight protrusion then what I can only describe as a dent, about the size of a £2 coin, it feels like there’s no bone, it definitely never felt like that a few months ago.  He’s on dexamethasone for ICP and takes slow release and liquid morphine.  He’s got quite severe learning difficulties from before the tumour so it’s hard for anyone to completely ascertain what’s going on, I’ve tried google and can’t find anything, his hospice care nurse is coming on Thursday, should I be concerned, the consultant hasn’t mentioned any more scans as he doesn’t want treatment so is palliative, but surely if things are changing it would be a better idea.  It’s such a horrible journey to be on.

thank you in advance 


  • FormerMember

    Hi Lynrik

    I am sorry to read about your Uncle. I too had a craniotomy and within two months I also had a recurrence in the scar tissue.

    My head also is no longer even and it has a raised bit. I was not sure if this was just because they cut it open and then put it back and that maybe it will never be 'how it was' or because of the scare tissue recurrence.

    When you see his hospice care nurse tomorrow please tell her all you have said here and she should either be able to answer your questions or point you to someone that can.

    I guess scans are mainly used to monitor and see how treatment is doing, but if he want's no further treatment they may not offer as many scans. But as you say he has learning difficulties they may be useful to ascertain what is going one and if say steroids need to be increased or similar to help with the symptoms.

    Please speak to his team and I hope they can help you out further. Sorry I have not been much help.

  • FormerMember
    FormerMember in reply to FormerMember

    Hi Gina,

    No honestly your reply has really helped, thank you so much, I’m so sorry for what you must be going through, having cancer is so difficult anyway but when it then moves or recurs in the brain it makes things even harder.

    my uncle was given a 3 month prognosis because he wouldn’t take any treatment, he’s definitely well exceeded that, he’s seeing a gastro consultant as his tumour was recognised to be an adenocarcinoma, but they can’t find it and I’ve red that with CUP the primary tumour can  be either expelled or immune system can get rid of it.  I guess at the back of my mind I’m wondering and most likely hoping the prognosis was wrong. 

    I will definitely speak to our hospice nurse she’s being great the consultant and specialist nurse don’t tell me much and because my uncle is like a child they treat him like one in explaining what’s going on, the hospice nurse is so much more open, I have a full power of attorney and have had for 9 years but hate to go over his head and find out more.

    Steroids are a sore subject they seem to make him crazy he gets so agitated and delirious he cannot sleep at all and don’t seem to have much benefit in pain etc, he’s refusing them too but the hospice nurse has talked him into 2mg and I think the fact he’s on 40 mg zomorph then 5 does of 10mg oramorph during the day has made him slightly more pliable.

    thank you so much again sometimes I think I’m losing my mind with all the stuff I notice with him, and feel I’m always questioning everything so tend to just keep my mouth shut now.

    i wish you all the best and thank you for taking the time to rely to me

    Lynne x