By: Kate Jopling

That’s the main finding of ILC’s new report on breast cancer and ageism, which we launched at a roundtable discussion among experts in breast cancer and ageing on 4 April in London.

The report reviewed the latest data on the experiences of older people with breast cancer, some seven years after the ban on age discrimination in health and social care came into force, to consider to what extent ageist attitudes are still affecting people’s experiences.

First the good news: thanks in large part to the advocacy efforts of people with breast cancer, parliamentarians and campaigning charities working on cancer and ageing, the story of recent years has been one of growing attention to the need to improve the experiences and outcomes of older people with breast cancer.

Experts gathered at our roundtable urged us to be positive about the progress that has been made – with the NHS running specific campaigns as part of the wider Be Clear on Cancer campaign focussed on older women, major trials exploring whether current age limits on breast cancer screening need to be adjusted and a major National Audit focussed on breast cancer and older people.

This progress is significant, and it is important to note that the work that has been done on breast cancer is streets ahead of that in relation to other cancers – where age differences in diagnosis, treatment and outcomes are just as stark, if not more so.

Yet, as ILC’s research suggests, there is no room for complacency – older women are still far more likely to be diagnosed with breast cancer via emergency presentation, there is a significant drop in treatment rates around the age of 75 with no obvious clinical justification, and older women still underestimate their risk of breast cancer, with around a fifth of women over 70 reporting that they do not regularly check themselves for signs of breast cancer.

There is more to do to make sure more older people receive earlier diagnosis and effective treatment. We need to understand better what works in encouraging people to recognise the symptoms of breast cancer and to present for diagnosis. And we need to make it easier for clinicians to make better judgements around the treatment options offered to older women – and in this regard there is a need for continued efforts to improve the evidence base around the effectiveness of different treatments among older people, particularly those with multiple conditions. Our experts were also clear that we need to move quickly towards agreeing on a core set of tools to support clinicians in assessing older people with breast cancer, and there was strong support in the room for incorporating the use of frailty measures into the standard pathways for all older adults.

However, there was also recognition that it is no simple task to disentangle those instances where age differences are the result of pernicious ageism, from those where they are explained by genuine differences in individuals’ profile of needs and wishes. We simply don’t understand enough about what older people really want, and whether the rates of surgery, radiotherapy and chemotherapy we see among older people reflect the different choices people in later life make based on robust assessment of the risks and benefits of treatment, or whether these reflect the influence of ageist assumptions either on the part of clinicians, or of older people themselves.

For example, to what extent are older people’s own misperceptions around their life expectancy or assumptions about their capacity to tolerate treatments leading them to refuse treatments from which they might benefit? And are clinicians sufficiently alert to non-clinical issues that may influence older people’s treatment decisions – such as the potential for people with caring responsibilities to refuse treatment which might require regular appointments – as they work through these options with them?

We left the room clear that, despite the progress made, there is more to do to root out ageism in breast cancer, and clear that our next moves must be informed by a real understanding of the perspectives of the older people affected.