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Treatment or not???

Cheney1968
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I found out that I had an agressive stage 4 Gliomablastoma brain tumour on the 10th of March 2023. I wasn't ill - just collected my new glasses at Specsavers. We are reeeling. I had a craniotomy on the 23rd of March which went well but, as is often the case with this tumour, it has tendrills and spreads quickly. I have been offered chemo and radiotherapy in approx 5 weeks time once I have my seizures under control (these started after surgery once steroids were reduced) I have already deteroiorated, lost most of my vision now, tired out. Some of this will be due to meds and recovery from a big operation. I was surprised to be offered ongoing treatment as I know this is an inevitable outcome. I am a fit and well 54 year old woman. After feeling elated about the prospect of some treatment to buy us some time I have now had chance to think things through, read all of the brilliant literature that we have been given and understand the possible side affects, the gruellilng nature of the treatment (for my entire family - not just me) and the reality of what sort of time it 'might' buy us. I am a very out-going, chatty, full on type of person and am really struggling with the prospect of the personality changes that might come about, I am already losing my voice along with my sight and confidence. I am really in anguish about becoming a 'shell' of a person for the last few months of life 'v' enjoying my next couple of months as myself with some managment of the undoubted progression of this tumour. I feel guilty for considering not accepting the treatment, whilst professional people, who I have the utmost respect for, are offering me a chance that others may not have been given. I do not feel that I would cope with the rigours of being so ill throughout treatment. I am already finding it hard to be so reliant on my family. It has all happened so quickly and my deterioration is all ready well under wayEven the thought of going back on steroids fills me with dread. The lack of sleep is awful.  I am super independent and capable with my own business. The thought of putting my family and myself through so much more pressure for me to simply become quiet, reclusive, and potentially miserable, aggresive and not much fun is proving unbearable to me but how dare I refuse and how on earth do I feel that I know better than everyone else? I feel dreadful. I am lucky as I know my family will support whatever decision I reach. We are coping so well under the circumstances and I am so proud of us. I don't know what to do. If this was curable I would be in no doubt about accepting treatment. My positivityand strength is not in question but I am also a realist and know myself and my personality. Such big questions in such a short space of time. It doesn't feel real at all.

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    Hello Cheney, so sorry to hear about your diagnosis and the suddenness of it all. I just wanted to wish you all the best whatever decision you come to. You sound like you are considering this very carefully and that you will have the support of your family whatever. Hopefully someone with direct experience of this will be along to offer some advice soon. In the meantime, take care xxx

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    Hi Cheney,

    A very warm welcome to the forum that nobody really wants to join!

    I am so sorry to hear about your diagnosis and know just how devastating it must be for you, especially at such a young age. Two things shine through from your post. First of all, your strength, positivity and realistic approach in dealing with such an aggressive diagnosis, which is to be commended. Second, the fact that you have a fantastic support network in your family.

    I am sorry to hear that you are already noticing a deterioration in your general condition. Whether or not to have treatment, is always a difficult question to answer and one that only you can decide upon. You seem to have done a lot of the groundwork already, in that you understand the nature of Gliomablastoma and how the effects of this could impact upon your life. Treatment can indeed be gruelling and would possibly leave you in a very different position at end-of-life. With refusing treatment, you need to consider that any new symptoms might still need to be treated in some way or another to give you relief.

    I don't think that your care team will feel in any way offended if you choose quality of life over quantity - many of their patients have made this decision in the past and many more will do so in the future. I am glad to hear that your family will accept your decision, whichever way it falls.

    Whatever you do decide, I sincerely hope that it is the right decision for you.

    You are in my thoughts and prayers.

    Please keep in touch and let us  know what you decide to do. We are always here for you.

    Kind regards,
    Jolamine xx

     

  • Offline in reply to Jolamine

    Thank you so much for taking the time to reply to me. It truly is appreciated. We have a meeting at 9.30am tomorrow with the oncology specialists to discuss my concerns and a further telephone meeting on Tuesday AM with a physcologist to help us even further. We've continued to talk, read and absorb everything we can. The support from every single direction is incredible. Our local charity for Brain Tumour has, ironically, got 2 completely relevant articles posted on their site which I stumbled across this evening. I feel that it is fate that I have read them the evening before my next crucial appointment! They have helped. Thank you, thank you. It is humbling that we have access to such support at this time. xxxxxx

  • Offline in reply to Cheney1968

    Hi heney,

    I am glad to hear that you are seeing the Oncologist tomorrow. I am glad to hear that you found the two relevant articles on your local brain tumour site and that you have found them relevant to your appointment - as you said, it must be fate!

    You tend to get rushed through to treatment fairly quickly, but don't be pressured into making a decision , if you don't feel ready yet.

    Does your local brain tumour charity offer counselling. If not, there are many charities that do and you might find it helpful to discuss your situation with someone from these. Macmillan, the Haven and Maggies are national, but there are a number of more local groups. It can sometimes be helpful to discuss your concerns with an impartial individual, who has medical knowledge.

    I hope that you get some help in reaching your decision tomorrow. It will help to write down any questions that you may have, as it is all too easy to forget something important during your consultation.

    Please let us know how you get on.

    Kind regards,

    Jolamine xx

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