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First ever publication of secondary breast cancer data met with concerns around absence of critical data

The first ever data on incurable secondary breast cancer in England has been published, as part of the National Audit of Metastatic (secondary) Breast Cancer (NAoMe).

New quarterly data from the National Cancer Audit Collaborating Centre (NATCAN) reveals that, between October 2019 and September 2022, 11,468 people in England had evidence of secondary breast cancer – which is treatable but cannot currently be cured – at initial diagnosis.[1]

Until now, the only available figure in England around secondary breast cancer has been an estimate that 57,215 people are living with the disease.[2]

Three years ago (May 2021), NHS England committed to delivering a new secondary breast cancer audit and NHS Wales confirmed (October 2021) they would also participate.[3] This was a significant milestone following over a decade of tireless campaigning by charity Breast Cancer Now and its supporters for improved data collection on secondary breast cancer, including specific calls for an audit in 2019.[4] The charity has since worked with the NAoMe project team at the NATCAN, helping to shape the insights that the audit will collate.

However, the charity is deeply concerned about the extent of missing data laid bare by the audit’s first report. Vital data on stage at diagnosis has only been recorded for 33%-43% of these patients during this period (October 2019 – September 2022), despite it being mandatory, since 2013, for Hospital Trusts to collect this data for everyone diagnosed with secondary breast cancer.[5]

Further, while the audit covers England and Wales and committed to reporting on both nations, the charity is concerned about its current lack of quarterly data on patients in Wales[6], given quarterly data is key to providing the most up-to-date insight.

Breast Cancer Now is calling for the NHS to urgently prioritise collecting comprehensive data on all secondary breast cancer patients in England and Wales. Until this happens, we’ll continue to lack the insights that are critical to designing and planning tailored services that can improve the lives of people with secondary breast cancer.

With NHS staff severely overstretched, additional support for Trusts and Health Boards to deliver improved data and reporting will be key to making this happen.

Baroness Delyth Morgan, chief executive at Breast Cancer Now, said:

“The first ever publication of secondary breast cancer data in England should be a huge milestone to celebrate. However, the current lack of data for patients in Wales and incomplete data for patients in England shows how far short the data currently falls of that needed to develop and deliver changes to treatment and care that are vital to improving the lives of people living with secondary breast cancer – and that both we and patients have been so desperately holding out for.

“It’s unacceptable that people with secondary breast cancer are still not consistently being counted, over a decade on from it being made mandatory to capture this data in England. Accurate data underpins all elements of a patient’s diagnosis, treatment, and care, and due to the NHS falling short of delivering this, it remains almost impossible for services and support to be tailored to their needs.

“With the NHS workforce so overstretched, solutions must urgently be found to support Trusts and Health Boards to collect this data. People living with secondary breast cancer do not have time to wait, and we owe it to them to speed up progress.

“That this comes at a time when patients with HER2-low secondary breast cancer are being denied the hope of more time to live – with the rejection of Enhertu on the NHS in England – is a heartbreaking reminder of just how far we are from guaranteeing all secondary breast cancer patients the treatment and care they deserve and indeed need, and how much more must be done.”

ENDS

Notes to editors

[1] NAoMe Quarterly Report October 2019 to September 2022, Reports - National Cancer Audit Collaborating Centre (natcan.org.uk)   (Published Wednesday 10 April 2024)

Evidence of secondary breast cancer at initial diagnosis was defined as where the ICD-10 code recorded was C50 AND where EITHER of the following criteria were met: stage at diagnosis was recorded as stage 4 orICD-10 codes for metastases were recorded in Hospital Episode Statistics Admitted Patient Care data within 12 months of the date of diagnosis. The period of October 2019 to September 2022 includes a follow-up period of 12 months using Hospital Episode Statistics Admitted Patient Care data. The quarterly report also includes patient characteristics data without this follow-up period for a larger cohort.

[2] This estimate is based on using hospital episode statistic data in England and is for 2020/21. Palmieri, C., Owide, J., & Fryer, K. (2022). Estimated Prevalence of Metastatic Breast Cancer in England, 2016-2021. JAMA Network Open, 5(12), e2248069 https://doi.org/10.1001/jamanetworkopen.2022.48069. This paper estimates 57,215 people living with secondary breast cancer in England in 2020/21.

[3] NHS England announces National Metastatic Breast Cancer Audit | Breast Cancer Now; NHS Wales commits to join National Metastatic Breast Cancer Audit | Breast Cancer Now

[4] Breast Cancer Now, Until Things Change, 2019

[5] NAoMe Quarterly Report October 2019 to September 2022, Reports - National Cancer Audit Collaborating Centre (natcan.org.uk)

[6] https://www.natcan.org.uk/wp-content/uploads/2023/11/NAoMe_Scoping-Document_Final-29.11.2023.pdf p.4

The NAoMe covers England and Wales, but it's vital we see data on secondary breast cancer improve across the whole of the UK. In Scotland, the Scottish Government made a commitment in its Cancer Action Plan, published last year, to improve data collection on secondary breast cancer. We’re actively monitoring progress on this commitment to ensure that progress is made. In Northern Ireland, there’s currently an audit underway, announced last February and funded by the charity Cancer Focus NI, delivered by the Northern Ireland Cancer Registry. Despite cancer strategies in Scotland and Northern Ireland committing to improve secondary cancer data collection, this is not yet being delivered and doesn’t not go far enough, stopping short of a full government funded audit.

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