Forum Discussion

Christina_BCNA's avatar
Christina_BCNA
Community Manager
2 months ago

November 27th is almost here..... 🥳🥳

Metastatic breast cancer (MBC) is treatable but incurable. No one knows how many people are living with MBC not just in Australia, but around the world, something that BCNA has been advocating to change.

"Our advocacy over the last three years has focused on counting those living with metastatic breast cancer (MBC) and our attention and determination has led to this defining moment. Through strong collaboration with governments, researchers, data experts, and consumer advocates, we have achieved what once seemed impossible - visibility for people living with MBC in our national data systems. This outcome is the result of the collective strength of a sector determined to transform invisibility into insight, and insight into influence. "

- Vicki Durston, Director of Policy & Advocacy BCNA

📝The successful reporting of national metastatic breast cancer data marks a significant step forward in Australia’s commitment to improving cancer outcomes. It demonstrates how far we have come in recognising and responding to the needs of people living with metastatic disease. 

Stay tuned to find out the numbers on November 27th....let's make metastatic breast cancer count. 

👉Learn more about MBC with our Upfront about breast cancer podcast episode  

5 Replies

  • I think mets patients are treated like second class citizens. I had to fight for a mets nurse. My treating hospital have breast care nurses but they only support stage 1 to 3. Wtf. That's actually discrimination.

    I have been advocating for metastatic nurses at this hospiral. I met with their executive and finally to cut a long story short, they are currently having their breast care nurses do the mcgarth training.

    This should not happen. I am sick. I needed help. I found my own mets nurses and i am thankful for that but i dont want other mets patients to go through this.

    When a person with mbc finds out about progression it is so traumatic. It's like a complete restructure to ones life, everything changes for you, the treatment, the side effects, tge treatment cycle etc. Plans get changed and everyones life in the home is changed too. It's enormous change for everyone. 

    Support for all with metastatic disease is critical.  It is hard enough and very lonely but support helps.

    • Christina_BCNA's avatar
      Christina_BCNA
      Community Manager

      Thanks Cath62​, you’ve raised such important points - if metastatic patients aren’t properly counted and recognised, it makes it harder to allocate resources and ensure the right support is available. Every person living with metastatic disease deserves to receive the right care that reflects their needs, especially as it can affect so many other areas of life as you mentioned - accurate data is key to driving that change. Thank you for speaking up!

    • arpie's avatar
      arpie
      Member

      That's abdolutely disgusting, Cath62​  that the BC nurses would not be there for Mets patients as well as Stages 1-3!  UNBELIEVABLE, actually!  And TOTALLY dismissive  😟
      It is critical to have GOOD support for all with BC - but especially those with Mets.   
      Well done for advocating for the future Mets patients, Cath - it would take a toll on you xx
      I hope you are going OK  xx   Take care, my friend xx

  • How the HELL can Gov estimate future costs and sufficient  (often substantial) costs re Mets patients if THEY DON'T EVEN KNOW HOW MANY AUSTRALIANS HAVE METS?

    It really is simple enough to do - with every NEW Mets diagnosed patient ... every Pathology Collection Service in EVERY STATE - should be bound by LAW to send that info to Gov Health to ADD to the current 'list'!  It is NOT difficult! They already do it for other 'notifiable' diseases ..... 

    ANY (or all) of these procedures mentioned below, should be 'at hand' within a reasonable distance from regional/rural/remote towns - just ONE within 200k of most major towns would 'work' - we are used to having to drive for our biopsies/surgeries!! ..... 

    But no - currently, everyone has to be flown/driven to a capital city or major town to get an accurate diagnosis ...

    IT IS NOT GOOD ENOUGH.

    Rural/Regional/Remote patients (in particular) are being treated as 2nd class citizens!  😡

    When I moved within 4hrs of a capital city - one of the first things I was told was 'When in pain ... take a plane'!!  Not very reassuring, is it!  😦. When both my husband & I were diagnosed with cancer, that is what we did.  We drove to Sydney for our surgeries, as our local 'downgraded' hospital was not 'up to' the required standard for major surgery.

    THIS (below) is what is needed for MOST (if not ALL) patients diagnosed with mets needs to have done as they are diagnosed for an accurate assessment.
    (And my husband was one of them :( )

    Diagnosing metastasis involves a combination of imaging tests like CT, MRI, bone, and PET scans, which show where cancer cells have spread, and blood tests to check for specific markers. A biopsy may be performed on a suspicious area to confirm the diagnosis by examining tissue samples. A lumbar puncture can also be used to check for cancer spread to the brain or spinal cord. 

    Imaging tests

    • CT (Computed Tomography) scan: Provides detailed cross-sectional images of the body to look for cancer in various organs.
    • MRI (Magnetic Resonance Imaging) scan: Uses magnets and radio waves to create detailed images, particularly useful for checking the brain, spinal cord, and bones.
    • Bone scan: Uses a radioactive tracer to identify areas of bone with increased cell activity, which can indicate metastasis.
    • PET (Positron Emission Tomography) scan: Uses a radioactive drug to show how tissues and organs are functioning, highlighting active cancer cells throughout the body.

    X-ray: An initial imaging test that can detect changes in bones or the chest that may be caused by metastasis. 

    Other diagnostic procedures

    • Blood tests: Can reveal high levels of certain substances, such as calcium, which may indicate cancer spread. Some tests can also identify tumor markers, which are substances released by cancer cells.
    • Biopsy: A small sample of tissue is removed from a suspicious area and sent to a lab for analysis to confirm the presence of cancer cells.
    • Lumbar puncture: Also known as a spinal tap, this procedure is used to collect and examine a sample of cerebrospinal fluid to check for cancer cells in the brain or spinal cord. 
    • Christina_BCNA's avatar
      Christina_BCNA
      Community Manager

      arpie​ It’s so understandable to feel frustrated when something that seems so straightforward and important took so long to make happen. Having accurate data on metastatic cases is essential for planning services and funding, and it would make such a difference for people who need the right care from the right health professionals! The challenges for those in regional and rural areas are defientely add another layer of complexity, another gap we need to work to close.