MUM HAS LEPTOMENINGEAL DISEASE

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

Parents
  • 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

Reply
  • 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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