Feeling lost numb and very scared

After many months of living on a rollercoaster having been diagnosed with  triple negative breast cancer March 2018  , with test treatments surgery’s test and more treatment and more test ! 

I received my recent CT results yesterday from oncology ! 

Not what I was expecting ! They are saying the cancer has spread to my lungs and I have further nodes present on my scan also !

Feeling lost , angry, numb and not sure what to do next.

Options are slim as I have underlying disease Dermatomyositis (DM)

How do I even begin to tell my family the news again ? Specially my two teenager boys

Just feel sick to my stomach x 

  • Hi

    I do not know how to answer this but i had to reply to let you know some one is listing.

    This is such a hard road we are all on and at times it gets harder.

    What was the slim Options do you know.

    You can not keep this to your self and you have started by telling us.

    Do you have a hubby or partner that is there for you.

    Perhaps a call to Macmillan there number is on the site if it was to help.

    I am struggling here please fill free to talk away if you fill better and its a safe place.

    Some one is always here with a listening ear.

    Take Care Ellie xx

    "You Never Walk A Lone"

  • so sorry to read your post. you have lots to worry about with your health without family worries as well. is there no one to help with breaking news to family with you?  2 shoulders are better than one. TC wish you luck with all your issues. 

    Derek

    onwards and upwards
  • Hi bright side of life.

    I am so sorry you find yourself here. It sounds like you have been through a lot already. My lung cancer is also metastatic, and I know how scary that is when they tell you it has spread, although there was 5 years between my first diagnoses and my lung diagnosis. My children were also teenagers the 2nd time around. My youngest was 13 and my elder daughter was 19. I told them quite quickly, as I was so unwell at the time they knew there was something serious going on. It’s not an easy thing to do, and it’s a time I will never forget. My youngest had to have counselling which my oncology team arranged for her through the Macmillan site at our hospital. I don’t know if you have anything similar where you are, but that might be an option for your boys? Also I don’t know if your boys are still at school or college, but my daughters school was very good at the time, and gave her lots of help and support. 
    I do hope you have someone to help support you through this time. 

    Chelle 

  • Thank you so much for your support x

    Yesterday was a hard day breaking the news to my boys and family specially when I don’t have the answers yet to what’s next. I have a great family support around me with an amazing fiancé and I know I am a strong, some say stubborn person that won’t go down without a fight ! I just need to get things straight in my head and that’s where I will struggle as I need answers to be able to process information but not sure at this point I am going to get them. 

    My boys school was great the last time so that’s my plan today is call them and keep them informed so support can be put in place.

    Oncology are calling me today to discuss treatment plan xx  

    Always look on the bright side of life

    Dancing! 
    When I go out I want to go out dancing Dancer DancerDancer

    https://m.youtube.com/watch?v=-BDImdAfodA️ 

  • Thanks for your support 

    Yesterday was the hardest day ever ! Telling family once is bad enough but to have to tell them not even 7 months after finishing last treatment has been devastating. But I do have My fiancé at my side who is my rock. 

    Thank you 

    Always look on the bright side of life

    Dancing! 
    When I go out I want to go out dancing Dancer DancerDancer

    https://m.youtube.com/watch?v=-BDImdAfodA️ 

  • Thanks for your support 

    My fiancé is my rock it was a hard day to day the least but I can now start to focus on me and the next steps for treatment. 

    They have said it is not curable but is manageable with the right course of treatment. 

    They have given me two options to think about , one is a trial but doesn’t have great data and would hold greater risk for my DM not been manageable, I would have to get a biopsy on lung and be on some base medication as everyone else but would mean I couldn’t have medication for DM which I don’t think I could cope with and would not give me a quality of life ! 

    Because they have found it in early stage my oncology has recommended I go back on similar weekly IV chemotherapy with a different combination to try zap it before it gets a chance to grow. 

    I don’t have all the facts yet I have lots of questions if I go down chemotherapy again what’s after that ! 

    Oncology is calling me later to discuss further so I am going to sit and write some questions down before I make my decision. 

    Thank you x

    Always look on the bright side of life

    Dancing! 
    When I go out I want to go out dancing Dancer DancerDancer

    https://m.youtube.com/watch?v=-BDImdAfodA️ 

  • That sounds encouraging. Many of us here who are incurable but stable. 

    Chelle 

  • Thank you , I think I have got my heard round things now and I just need to stay positive and take the treatment that is recommended to me by my oncologist. 

    Have you ever heard of craniosacral therapy ?  
    https://www.craniosacral.co.uk/ 

    I was thinking of giving it a go ? 

    Cheers x

    Always look on the bright side of life

    Dancing! 
    When I go out I want to go out dancing Dancer DancerDancer

    https://m.youtube.com/watch?v=-BDImdAfodA️ 

  • Hi

     no I haven’t heard of the cranial thing but I do feel that anything that makes you feel better is worth a go.

    i feel for you as I’ve just found out that having had radical radiotherapy with a curative Intent and having been told since treatment that things were stable with my nsclc since diagnosis in January 2019 I now am told that inflammation in my lung was masking the fact that the cancer has leaked into the pleura making it now incurable.

    my three girls have taken it very badly and that’s so hard to bear. 

    I am currently waiting to discuss with medical team at Royal Marsden next week what the next step is in terms of treatment.

    i now have quite a bit of pain which of course makes me appear more unwell again making it harder for those around.

    my husband is very supportive as are the girls and I’m grateful and fortunate in that.

    hope you have good news on your treatment options.

    xx