Find out why we are campaigning to improve care for secondary (metastatic) breast cancer and how this will impact your work.
Why Secondary breast cancer?
For more than a decade we've been campaigning to improve the care and treatment of people with incurable secondary (metastatic) breast cancer. In 2006 we set up and coordinated the Secondary Breast Cancer Taskforce which identified gaps in treatment, care and support for people living with secondary breast cancer.
Since then, we have set up a number of services to support people living with secondary breast cancer and have campaigned for improvements.
Demanding change for people with Secondary breast cancer
Building on previous research[i], in 2019 we undertook a comprehensive survey[ii] of people living with a diagnosis of secondary breast cancer, to understand the current experiences of those living with the disease. Over 2,000 people took part in the survey, making it the biggest ever survey for this patient group across the UK.
The results showed that many people with secondary breast cancer experience delays in diagnosis, struggle to access the support of a specialist nurse, fear they won’t be able to access the treatment they need in the future, and are not given sufficient information about clinical trials.
The survey found:
- 23% of respondents had to see their GP 3 or more times before they were diagnosed
- Only 13% of respondents who had previously had breast cancer felt they were given enough information from healthcare professionals on the signs and symptoms of secondary breast cancer to look out for
- 1 in 6 respondents said they didn’t feel confident they would have access to the most appropriate drug treatments in the future
- 53% said they had not been given enough information about clinical trials by healthcare professionals
- Only 30% of respondents said they see a CNS regularly
Based on the responses to the survey, we are calling for prompt diagnoses, for fast access to treatments patients need at a price affordable to the NHS, and for more specialist support, as well as for a comprehensive understanding of the number of people living right now in the UK with secondary breast cancer - something we still don’t have despite a decade of calling for this and commitments from policy makers to tackle this.
Our campaign demands urgent change so that everyone with secondary breast cancer can live well for as long as possible.
[i] Breast Cancer Now (2016-2018), Secondary. Not Second Rate. Available at: https://breastcancernow.org/get-involved/campaign-us/secondary
[ii] Breast Cancer Now (2019), The Unsurvivors. Available at: https://breastcancernow.org/get-involved/campaign-us/unsurvivors
Current policies in the nations
In July 2015, the Independent Cancer Taskforce published ‘Achieving world-class cancer outcomes: A strategy for England 2015–2020’, which set out a strategy to deliver significant improvements to cancer care. The majority of the Cancer Strategy focuses on the prevention, treatment, support and experience of people living with and beyond primary cancers, however there are some relevant recommendations relating to those living with secondary cancers. These include the collection and publication of data on all secondary cancers, the recommendation that all cancer patients have access to a clinical nurse specialist, and the streamlining of the MDT process to allow focus on more complex cases, such as secondary breast cancer.
More recently, the NHS Long Term Plan set out the ambition that, by 2021, ‘All patients, including those with secondary cancers, will have access to the right expertise and support, including a Clinical Nurse Specialist or other support worker.’ NHS England’s People Plan for 2020/2021 confirmed that training grants are being offered for 350 nurses to become cancer nurse specialists.
The National Institute for Health and Care Excellence (NICE) has two breast cancer guidelines which are applicable in England and Wales . However, there is a lack of clear guidance on ensuring people are aware of the signs and symptoms of secondary breast cancer once they have finished treatment for primary breast cancer. Additionally, NICE’s suspected cancer guidance lacks advice for healthcare professionals on recognising and referring symptoms of secondary cancers. These shortcomings represent a missed opportunity to ensure GPs and patients recognise the signs and symptoms of secondary breast cancer, which would enable a quicker diagnosis. Furthermore, although it has been compulsory for data to be collected by NHS Hospital Trusts on the number of people diagnosed with secondary breast cancer in England since January 2013, in 2016 the government estimated that only a quarter of Trusts were collecting this in full and to date no data have been published.
The Wales Cancer Network produced the Cancer Delivery Plan for Wales (2016–2020) in November 2016. The plan recognises that ‘patient experience… among metastatic patients is not as well understood as experience for other patients’. It goes on to state that services should meet the different needs of the population and outlines the need for patients with secondary cancer to be quickly identified, have data collected and have full access to services and support to meet their specialist needs through improved collection of information on the care provided, and a peer review delivered by the Wales Cancer Network. The Plan is due to end at the end of this year. Currently, there are no plans to produce a new strategy.
The Digital Health Strategy for Cancer in Wales 2017-2020 included an aim to collect data to ‘capture the post treatment pathways including rehabilitation and living with and after cancer, as well as data on those patients who have a recurrence and/or metastatic disease’. However, there are still no up-to-date figures on the number of people living with secondary breast cancer in Wales.
The Scottish Government published Beating Cancer: Ambition and Action in 2016. Whilst it includes an ambition ‘to see all people with cancer, who need it, have access to a specialist nurse during and after their treatment’, the strategy does not specifically address the support needs of patients with secondary cancers.
In April 2020, the Scottish Government published an update to the cancer strategy. In this update the Scottish Government has committed to working with Breast Cancer Now on a number of areas relating to secondary breast cancer, including: ways to improve symptom awareness among the public and health professionals; improving data about secondary breast cancer; improving access to specialist nursing, including what funding and training could support his; support for NHS employees with breast cancer; and access to clinical trials.
Data collection is still not mandatory in Scotland, though some progress has been made as the Scottish Cancer Registry, working with the charity, identified an estimated 4,090 patients with secondary breast cancer in 2013. We would like to see this figure updated on an annual basis.
There is currently no clinical guidance in Scotland that specifically covers secondary breast cancer.
A cancer strategy is currently being developed in Northern Ireland and we are calling for it to include a commitment that everyone with secondary cancers should have access to a CNS.
 The Independent Cancer Taskforce (2015), Achieving World-Class Cancer Outcomes: A Strategy for England 2015-2020. Available at: https://www.cancerresearchuk.org/sites/default/files/achieving_world-class_cancer_outcomes_-_a_strategy_for_england_2015-2020.pdf
 NHS England (2019), The NHS Long Term Plan. Available at: https://www.longtermplan.nhs.uk/publication/nhs-long-term-plan/
 NHS England (2020), We are the NHS: People Plan for 2020/2021 – action for us all. Available at: https://www.england.nhs.uk/publication/we-are-the-nhs-people-plan-for-2020-21-action-for-us-all/
 NICE (2018), Early and locally advanced breast cancer: diagnosis and management. Available at: https://www.nice.org.uk/guidance/ng101
 NICE (2009), Advanced breast cancer: diagnosis and treatment. Available at: https://www.nice.org.uk/guidance/cg81
 NICE (2015), Suspected cancer: recognition and referral. Available at: https://www.nice.org.uk/guidance/ng12
 Department of Health (2016), Breast Cancer: Written question – 32369. Available at: https://questions-statements.parliament.uk/written-questions/detail/2016-03-23/32369
 Wales Cancer Network (2016), Cancer Delivery Plan for Wales 2016-2020. Available at: http://www.walescanet.wales.nhs.uk/sitesplus/documents/1113/161114cancerplanen.pdf
 NHS Wales (2016), Cancer Information and Intelligence Framework: A Digital Health Strategy for Cancer in Wales 2017-2020. Available at: http://www.walescanet.wales.nhs.uk/document/323719
 The Scottish Government (2016), Beating Cancer: Ambition and Action. Available at: https://www.gov.scot/publications/beating-cancer-ambition-action/
 The Scottish Government (2020), Beating Cancer: Ambition and Action (2016) update: achievements, action and testing change. Available at: https://www.gov.scot/publications/beating-cancer-ambition-action-2016-update-achievements-new-action-testing-change/