Stage 1 hormone sensitive to Stage IV

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Ekay
Ekay Member Posts: 1
Diagnosed last week with stage 1, hormone sensitive BC in my left breast after I came across a lump. I am 41 with 2 little sons, 4 & 6- it was a massive shock. After CT, bone scans & MRIs this week, my diagnosis has now changed to stage IV oligometastatic BC after finding it had spread to one vertebrae. To say I’m devastated is an understatement going from a curable stage 1 cancer to this. I am beside myself with worry on what this means for my kids- not being there for them, the battle ahead, continuing to work/pay mortgage & health bills and what being diagnosed with stage IV really means, particularly in regards to life expectancy.  I don’t even know how I am going to cope/function with this news. I am meeting with my oncologist tomorrow to discuss what’s next- perhaps this will help. I did have surgery planned for mid April but this may change now. I would love to hear any suggestions on coping with your diagnosis, esp those with metastatic breast cancer. How do you stay positive to get through it? Thanks so much x

Comments

  • Julez1958
    Julez1958 Member Posts: 1,160
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    Hi @Ekay
    So sorry to hear about your diagnosis that is a lot to get your head around.
    There is a lot of info on this website including stuff specific to metastatic breast cancer including the “Hopes and Hurdles” publication.
    You may wish to join the private group “Living with Metastatic Breast Cancer”  - if you have trouble joining call the hotline number.
    Take care and virtual hugs🌺
  • Cath62
    Cath62 Member Posts: 1,343
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    What a shock @Ekay, you naturally have so many things to think about and work through. It's so overwhelming and s roller-coaster of emotions to work through. I hope you have good supportive family and friends around you.

    Sometimes it is hard to talk to family and friends about all the emotions that go with a diagnosis so you may want to talk to a good counsellor who has experience with cancer.

    You oncologist will definitely discuss treatment with you and how to manage your cancer but also check in with your breast care nurse if you have one allocated to you. 

    There is the private group as mentioned above and the McGrath Foundation is also an option too. 

    I find staying in the present moment as much as possible the best way to stay positive as you say. Not easy when we are stressed and worried but looking back to the past isn't helpful and nor is speculation about the future. Day by day is the way to go and step by step.

    Have you ever tried mediation or deep breathing? I find these 2 things helpful when i am overwhelmed. Also I started a gratitude journal using an app called delightful. 

    If you need a bit of a break with the family then the Otis Foundation offers holiday accommdation and it is a good option between treatments for time out. 

    I hope others will suggest a few other things for you. I send you a big virtual hug and best wishes for your appointment. 
  • cranky_granny
    cranky_granny Member Posts: 778
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    Welcome @Ekay to BCNA This is a great place to come and investigate and learn and also share or vent if needed. There is usually someone on here that can point you in the right place to gather info. 
    I do have Mets. Diagnosed initially in 2016 the mets found in 2019. Its a real head spinner at first. The oncologist will fill you in with the options for path ahead.  Take someone with you for support and another set of ears. take a list of questions. 
    Some say record the session i never worked how to There is a tick sheet that you can download and print which helpful. Take notes if you need to and don’t let them rush you through. 
    I always put notes on my phone and a reminder in my calendar to look at the notes. I’m a fair bit older than you and my memory is not what it used to be. And stressing makes it worse. 
    You will have more questions after today. Once your care plan is put into place. 
    If you type a word into the search bar it also can give you some answers @arpie is great source of the links to where to find stuff. Theres lots of good podcasts on here too 
    This is doable, not always fun and there is help available for almost everything. 
    Let us know how you get on with the Onc. And hopefully you will be appointed a McGrath nurse who is often a great go to. 
    I’ve been a one day at a time and it has served me well. Theres heaps of learning coming your way 
    sending hugs 🤗 and strength 🦾 your way. 
  • arpie
    arpie Member Posts: 7,754
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    I am So sorry to see you join our exclusive club and the cruel double diagnosis, @Ekay  - you will still be in shock too xx.  As @wendy55 says - this shitty disease IS manageable & virtually considered a ‘chronic’ disease …. And it actually mucks with your brain even more than your body :( So NEVER be afraid to ask for help xx

    Check out Charlotte Tottman’s podcast here - it has a wealth of information and as a cancer psychologist. - she has BEEN thru breast cancer herself, so knows EXACTLY what we’ve all been thru & are still going tru, even after active treatment finishes!

    https://onlinenetwork.bcna.org.au/discussion/23866/podcast-series-upfront-about-breast-cancer-what-you-don-t-know-until-you-do-with-dr-charlotte-to#latest

    Feel free to put up any queries/questions and hopefully we’ll be able to help you xx. And Definitely record your team meetings on your phone, as it is easy to become distracted on one comment & miss the next ….

    I hope you have lots of family & friends stepping up to the plate and giving you lots of support & love, as you let them know xx.  And you don’t need to tell EVERYONE in the early stages - some of my extended family didn’t find out til 12 months later …. 

    And Don’t forget you can talk to our help line too xx 1800500258  

    When you have a few minutes spare, please check out this post - as we have lots of ‘stuff’ to show & do as well as the serious things - your pets, gardens, even cool recipes …… and the ‘tick sheets’ that @cranky_granny mentioned are down the bottom, to self assess yourself (and take the sheets with you to your team meetings as it is often easier giving it to them, than talking about it.). We even have a couple of really fun posts too, as we all need a laugh. Xx. Feel free to add any of your own comments on any of the links, too.

    https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-our-new-members#latest

    Take care & all the best for your ongoing appointments - if you PREFER to have the surgery (and I can fully understand why you’d choose to xx) discuss it with your surgeon & get a 2nd opinion as well, if needed xx
  • Abbydog
    Abbydog Member Posts: 486
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    Dear Ekay,
    I'm so sorry for you and your diagnosis. 
    You haven't put anything in your profile. I'm sure your head is in a spin.
    Do you have a partner and family, to help you through this?
    Please seek some counselling. Through BCNA or Breast care nurse if you have one. Or through the hospital
    you are having treatment at. 
    I think CentreLink has financial advisors.
    If you have been employed, you may have Income Protection Insurance in your Superannuation, and other insurance too.
    I wish you all the best.
  • Tammy9
    Tammy9 Member Posts: 7
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    Hi Ekay,

    Im awaiting my results and a treatment plan. I hope you're doing ok? 
  • Tarma
    Tarma Member Posts: 73
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    Hi Ekay, I was just cruising through old posts and had to stop and ask "How are you"? 
    😊