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Newly diagnosed

BellakBellak Member Posts: 1
edited March 2020 in Newly diagnosed
Hi I’m 44 and have just been diagnosed with triple negative metastic breast cancer. It has spread to my liver. First time cancer and extremely scary. After first finding out it was cancer it took nearly 3 weeks to get oncologist appointment and then had a pet scan. They have referred me for a clinical trial at the PA but everything seems to take so long. Meanwhile I’m scared it’s spreading more. Finally got a phone call yesterday to go in tomorrow to have all this pre screening tests done. Let’s hope I meet the criteria. I’ve been just trying to live life normal and trying to be very positive but is so frustrating. 

Comments

  • Dory65Dory65 Member Posts: 323
    Hi @Bellak, the waiting is truly horrible. Do you have a Breast Care Nurse? Even though I did not meet mine in person, I emailed my concerns and questions and spoke on the phone with her in the weeks after my diagnosis. It helped.
    What's your general location? There may be a local support group which you could find on this forum or through the Cancer Council. Wishing you all the best.xxx
    https://www.bcna.org.au/about-us/advocacy/position-statements/breast-care-nurses/
    https://www.bcna.org.au/metastatic-breast-cancer/peer-support/
    https://www.bcna.org.au/services-and-support-groups/services/31400
    https://www.cancercouncil.com.au/get-support/coping-with-cancer/
  • primekprimek Broken HillMember Posts: 5,392
    Hi there and so sorry for your diagnosis. I'm sure you'd be in shock just trying to take it all in. You may have this already but wanted to ensure you have all resources unavailable.

    https://www.bcna.org.au/resource/kits/hope-hurdles/

    Also I'm not sure if you are a Mum with young kids or have lots of support so thought if you are this might be helpful also if you are

    https://mummyswish.org.au/
  • TinksTinks AdelaideMember Posts: 231
    Hi @Bellak I’m sorry to hear about your diagnosis, then the seemingly endless waiting for treatment to begin. Reaching out makes a huge difference, and Its great you have connected to the network..if you have questions or want to talk about how you are feeling,how’s everything going, this is the place. Hang in there and all the best for your trial appointments. Once you know what track you will be on, it will feel better.  Lots of love xx
  • youngdogmumyoungdogmum Member Posts: 250
    Hi Bella
    Really sorry to hear. I was treated at the PA last year for hormone positive. There are several breast nurses, one McGrath, one non McGrath and one focused on the oncology side of things. Her first name is Emma have you spoken with her yet? 
    I don’t know if it’s open to metastatic patients but my friend did a clinical trial with immunotherapy last year for triple negative, this was out of the Mater in Sydney but I know they had other sites across Australia. 

    I can try to find the link for the above trial info if it’s not the one you’re being considered for so you can ask about it. 

    It’s hard waiting for stuff as a public patient, but I have nothing but good things to say of the PA. 
  • AhnnAhnn Member Posts: 42
    So sorry to see you here @Bellak. No one wants to hear that C word then be left in limbo waiting for what's going to happen next. The waiting part is the worst as the other ladies have said. Come here if you need to talk to people who know what you're going through.  Before you know it you'll be having treatment and back in control of what is happening 
  • arpiearpie Mid North Coast, NSWMember Posts: 6,225
    Hi @Bellak - so sorry to see you here & read your diagnosis.   You'll get lots of support and helpful info from our members here.  

    I hope you are accepted into the trial - fingers & toes crossed for you. xx

    If you find yourself getting really stressed (as our minds go into overdrive when we get the diagnosis) make sure you ring the helpline here, to get some helpful tips.

    You can also join the Metastatic Group & there, you can discuss any issue in total privacy with those who are going thru treatment.  @Riki_BCNA can help you sign up.
    https://onlinenetwork.bcna.org.au/group/2-living-with-metastatic-breast-cancer

    Take care and all the best  xxx
  • Giovanna_BCNAGiovanna_BCNA Member Posts: 1,839
    Hello @Bellak sending you a private message
  • jennyssjennyss Western NSWMember Posts: 1,573
    Dear @Bellak,

    from jennyss in Western NSW
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