Bleak outlook

  • 36 replies
  • 53 subscribers
  • 2601 views

Found out this week I now have brain mets in addition to lung and spine.  Only had results from head scan so far and still have body scan results to come which I know are going to show progression from the worsening cough and back pain I have.

im not sure what radiotherapy I can have as it depends on number of mets - there is more than one but they are small and currently causing no symptoms. Whole brain rt seems a last resort so I really hope they might consider targeted first.

I was about to enrol onto a trial before this news so that’s all gone and of course so has my driving license.  I’ve been working and can do so home from home but I think I’ll give that a rest for now.

what scares me most is the impact on my kids.  My eldest is about to leave home for uni and my middle one is entering her GCSE year.  If I can get through to after her exams then that would be something but things really seem quite bleak right now.

Hoping I will have something more positive to focus on next week 

  • Oh Elysian

    I am sorry to hear your news.

    Do not give up, there is always hope, we always  look on the bleak side, only natural, and then we get our fighting mode on,  You have some thing to fight for, and that will keep you going, i hope others come in, that may be in the same situation as you, and they will, help you, more than i can.

    So please, its not over till it is over, and i am sure you have that fight in you.

    My thoughts are with you, 

    Ellie xs

  • Oh , I'm so sorry to hear that. Sounds like you're young with young children. I hope you can get some targeted therapy and you have good results. There's always a chance of good fortune.

    Tvman 

    Love life and family.
  • Hi Elysian, sorry to hear your news, it is so hard when you have children to think about. But stay strong, who knows what treatment might be just around the corner, and miracles do happen. So try to stay positive it is not easy initially I know, but once you are able to it does become easier. Hopefully once you are over the shock of what has been said you will be able to think more clearly about the future.

    I can’t really give you any advice other than to say we have all been where you are now and have come out the other side. Many of us have also passed our sell by dates and so may you.

    love and hugs 

    Maggie xx 

  • I was diagnosed with adenocystic carcinoma in 2009.

    I now have mets to my lung liver and base of skull. So the mets are not in my brain.

    when diagnosed I had 33 sessions of radiotherapy to my neck and a year ago I had 5 sessions of radiation to my brain and it improved my headaches 

    I did not have proton radiation but my radiotherapy was carefully planned to help my headaches and I have not had long term side effects from those 5 doses 

    I hope you can have some positive treatment xx

    Ruth 

  • The additional shock of it returning is I think even harder sometimes to process, especially if there's been a long period of remission in between, but as others have said, things turn around. It's natural to have bleak thoughts now, but there is always hope that there will be 'front-line' treatments and , if not, then delaying treatments that buy time. And as many can testify, in buying time, another chance can come along and put you on a trial that might just help you turn that corner back to stability. So please don't write yourself off. Equip yourself with the knowledge you need and find out what the possibilities are. Do let us know how things go. Rainie x

  • Sorry didn't mean to flag to moderator I was falling asleep and must have pressed it. 
    please don't give up, I thank everyday that I wake up and am here to fight another day. Hug's to you xx

  • Hi Mom of five, Don't worry about pressing the wrong button, personally I think the Flag to Moderator should be on the far right hand side, so that it cannot be pressed by mistake as it happens often!

    Love Annette x

    Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!
  • Hi Elysian, Let's hope the mets in the brain won't cause any problems. Loosing your Driving License is bad enough!

    Since your first dx in 2016 there have been many new drugs and treatments developed so I hope they find one to suit you!

    please let us know how you are doing!

    Love Annette x

    Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!
  • Hi again Elysian, I meant to say, if the notifications coming to your email are getting too much for you then you can always turn them off.

    Then when you log in, press the lightening strike in the upper right of the page, click view all and it will give you the most recent posts, so you can read them and/or answer them as you please!

    Love Annette x

    Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!
  • Thank you Ellie.  I know I will feel better particularly when there is action to focus on.  I will still keep fighting and living life the best I can