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AMay

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  1. Like
    AMay reacted to Tom Galli in Chemoradiation.. What next?   
    Amay,
    I well understand frantic and scared, also sadness and anger.  All are, unfortunately, common symptoms with lung cancer.
    I feel hampered in that I don't really understand the UK medical system so I can't help you in discussions with the registrar.  In truth, I don't know what a registrar is in your medical system.  We deal directly with our physicians and hospitals without intervention (for the most part) from third parties.  Eric Byrne is a UK moderator of our forum. Perhaps you might message Eric, explain your discussion with the registrar, and see if he can help you negotiate approaches that might be beneficial to your mother.
    To connect with Eric, click on "Staff" and select the envelop icon under his name.  I'll message Eric in advance and give him a heads up.
    Stay the course.
    Tom
  2. Like
    AMay got a reaction from Tom Galli in Chemoradiation.. What next?   
    Tom, as before, thank you for your detailed reply.
    I know I'm frantic, I just feel scared and I need to compose myself so I can carry on reassuring my mum confidently based on facts. I feel so sad and angry for her that right before treatment has finished the registrar in a word has said but it's not going to cure it. Surely there are people out there that do beat this crappy disease who haven't had surgery. As you say about Cyberknife. I've been exploring that. I wonder if there's a way that can eradicate the cancer from the gland in the middle of the chest because then mum would be a candidate for surgery to remove the tumour in her lung.
    Undortunatley mum's test can back negative for a mutation.
    We're never giving up, I know it's going to take time and patience. I just wish the attitude of the registrar reflected our determined approach to this.
    Merry Christmas to you and here's to a happy and healthy 2017.
  3. Like
    AMay reacted to LaurenH in Lurking for a while.. Thought I would post   
    Hi, AMay,
    I'm glad that you posted and happy that you've already been able to connect with Lily and Tom. LCSC members are full of stories and advice from their own personal experience. It can be nice to connect with people who understand what you're going through. Please continue to explore the discussion forums and blogs and share updates as often as you feel comfortable. This is a great place to ask questions too, so I encourage you to fire away!
    Let us know how we can help!
    Lauren
    --
    Digital Community Manager
    LUNGevity Foundation
  4. Like
    AMay got a reaction from Tom Galli in Lurking for a while.. Thought I would post   
    Lily - Thank you for your kind words. I'm sorry to hear of your father's diagnosis but great to read that you're still enjoying each other's company, long may this continue. 
    Tom - I've read quite a few of your posts and in a way clung on to what you have said and your experiences. I'm aware that each individual is unique but you really do bring hope to a lot of people.
    I hope I get to speak to you both again soon.
    Best wishes.
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