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Leptomeningial Disease

Bonney63
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Hi..just struggling a bit as having tests for Leptomeningial disease, which has a very poor prognosis. I have secondary breast cancer in my bones and it may have spread further. I have had a numb chin for a few weeks and raised my concerns, which led to various scans, mri and now lumbar puncture. Just wondering if anyone out there has been diagnosed with this and how they are coping? I'm in limbo at the moment not knowing what's wrong with me and so scared it's bad news!  The waiting for results is just awful! 

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  • Hi Bonney, 

    I'm sorry about the tests you're currently having. I know this must be quite scary for you at the moment but we're all thinking of you and will have our fingers crossed for a good outcome.

    In the meantime, you can read up on leptomeningial disease on our website. Our lovely team of cancer nurses are also on hand if you'd like to talk things through with them. They're available on 0808 800 4040, Monday - Friday between 9a.m - 5p.m.

    I hope some of our members who have experience of this will get back to you soon but do feel free to have a look for other discussions you can join by using the 'search forum' option in the purple bar above.

    Kind regards,

    Steph, Cancer Chat Moderator

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