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MUM HAS LEPTOMENINGEAL DISEASE

LittleDC93
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Hi, I'm new here and just struggling to come to terms with everything  my mum was diagnosed with metastatic breast cancer last year, we were told a few weeks ago it's now in her brain, and is leptomeningeal disease. She started chemo, but was taken off it yesterday an now the only option is whole brain radiotherapy. I'm so worried/scared to see her go through that and not sure what to expect, I know the prognosis isn't good .  She's already becoming forgetful, paranoid and her personality is changing. It's so hard seeing this change her

  • A very warm welcome to Cancer Chat LittleDC93 although I'm very sorry to hear your mum is now contending with leptomeningeal disease.

    This must be incredibly difficult you for both, especially with you already noticing the change with her personality and behaviour, but hopefully the radiotherapy that is being proposed will help alleviate some of her symptoms.

    If it would help to talk things through with one of our cancer nurses, they're available on 0808 800 4040, Monday - Friday between 9a.m - 5p.m. With their knowledge and insight they will do all they can to answer your questions and address any other fears or concerns you have about this treatment or what may lie ahead on your mum's journey.

    Hopefully some of our members who have supported friends and/or loved ones in a similar position will stop by soon to share their experiences and advice but in the meantime, we're thinking of you LittleDC93 and sending you all our support at this very challenging time.

    Do let us know how things go when you feel up to it and remember that you are not alone.

    Kind regards,

    Steph, Cancer Chat Moderator

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    Hi LittleDC93,

    I am so sorry to learn that you find yourself in this awful situation. My mum struggled with primary breast cancer for 12 years, before we were informed that it had spread to her liver, lungs, bone and brain. This was 28 years ago, when treatments were not as well honed as they are today. To watch her fade away, was one of the hardest things I have ever done. I felt so useless and helpless, when there was nothing that I could do to ease things for her. One thing that I do believe though, was that she was happy in the knowledge, that we were always there for her, right to the very end. Remember that hearing is one of the last senses to go, so even if your mum seems asleep or unconscious, speak to her.

    We were never given the chance of whole brain radiotherapy. Does her consultant feel that this will help your mum and, if it will only prolong her time, by how long will it extend it? How does your mum feel about having this treatment? Sorry to bombard you with questions, but they are important for your mum's welfare. You do not say what age your mum is, but I can understand your worry about her at having to undergo this treatment. 

    I am thinking of you both and am always here if you want to chat.

    Kind regards,

    Jolamine xx

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