kirstin-spencer

We are very much minding the gap!

Breast Cancer is the most diagnosed of ALL cancers worldwide.  In the United Kingdom, Metastatic Breast Cancer is the biggest killer of  working age women aged 35 –64 in England (https://www.ons.gov.uk/peoplepopulationandcommunity/
birthsdeathsandmarriages/deaths/bulletins/deathsregistrationsummarytables/2022) and approximately 30% of women with primary breast cancer will become metastatic (their disease will come back, spread and become incurable i.e. terminal).  These facts seem to lie under a thick cloud of dust where most people are not aware of them until stricken with disease themselves and it is too late.  Looking the other way to the problem is turning your back on a huge cohort of women: mothers, wives, daughters, close friends who are currently hidden in a failing system.  No one is counting them (except for the approx. 5% of ‘de novo’ patients, who present as metastatic at their first or primary diagnosis).  The NHS cannot plan for adequate care and treatments because the NHS has no idea of the real extent of the problem and the number of women with metastatic breast cancer.  The NHS made it mandatory to count women with metastatic breast cancer in 2013.  Nobody followed their compulsory mandate!  Who is responsible for this?  Why did no one with the power do something follow this up?  Where is the accountability? 

You may be sitting busy in your own world and think, “Who really cares?”.  I would balance that with the fact that, breast cancer does not differentiate in which person type it develops.  You cannot be sure that you, your daughter, sister, mother or close friend won’t become one of us. 

This is why I believe raising awareness of just how prolific this disease is, is vital.  Together we can form an involved, informed community and insist the NHS must be held accountable to its stakeholders.  Probably, the most important recent development is an acknowledgement of the huge data gap existing around metastatic breast cancer.  A National Audit of Metastatic Breast Cancer (NAoMe) was commissioned in 2022. T he scoping should be simple and not get lost in the metastatic (secondary) issues before it has addressed the major issue: ‘How many of us are there?’. 

NaoMe MUST finally address the number of women living with metastatic disease so ensuing NHS staffing issues, drugs access and care gaps can be meaningfully assessed and addressed. 

    1. COUNT how many women currently live with metastatic breast cancer 
    2. Metastatic breast cancer women should check their oncologist has registered their metastatic disease on the National Cancer registry database.

But why should this be our issue? 

For primary breast cancer patients, a National Audit of Primary Breast Cancer (NAoPri) has also been commissioned.  Fear of recurrence is a weighty issue and for good reason.  If a recurrence is not caught early by robust post-treatment follow-up strategies, it can become metastatic.  Unfortunately, many of us metastatic women with red flag symptoms of recurrence were dismissed in clinic instead of being followed up.  Once you become metastatic, there is no turning back. 

Currently in the U.K., tens of thousands of women harbouring a multitude of different breast cancers at all stages are simply falling through the gap faster than we can catch them. 

Who Really Cares?

Kirstin Spencer

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