Breast cancer survival improving but many patients being 'systematically left behind': Commission

The commission’s lead author is Charlotte Coles, from the University of Cambridge’s Department of Oncology, who is also a National Institute for Health and Care research professor and oncology consultant at Cambridge University Hospitals NHS Foundation Trust.

Professor Coles said: ‘Recent improvements in breast cancer survival represent a great success of modern medicine. However, we can’t ignore how many patients are being systematically left behind.

‘Our commission builds on previous evidence, presents new data, and integrates patient voices to shed light on a large unseen burden. We hope that, by highlighting these inequities and hidden costs and suffering in breast cancer, they can be better recognised and addressed by health care professionals and policymakers in partnership with patients and the public around the world.’

Exposing the hidden costs of breast cancer

The associated costs of breast cancer – such as physical, psychological, social, and financial ones – have an immense impact but under-recognised. As many of these costs are not captured by current global health metrics, the commission established the UK-based pilot study (known as CASCARA), to provides a snapshot of the economic burden and supportive care needs for people affected by breast cancer.

Nearly all of the 606 people living with breast cancer and carers surveyed by the commission raised physical or wellbeing issues related to breast cancer. ‘I lost my job when I started chemotherapy as I could not cope very well,’ one participant said. ‘It took me a long time to ask for help with sexual dysfunction’, said another.

Additionally, one participant in five with early breast cancer and one in four with metastatic breast cancer reported having difficulties in covering the travel and treatment costs, with many saying they had financial problems. This pilot research suggests that – even in countries with a health care system free at the point of care – people with breast cancer can incur hidden costs.

We hope that, by highlighting these inequities and hidden costs and suffering in breast cancer, they can be better recognised and addressed by health care professionals and policymakers in partnership with patients and the public around the world [Charlotte Coles]‘Metastatic breast cancer remains poorly understood by the public, policymakers, and even health care professionals,’ said collaborator and patient advocate Lesley Stephen. ‘Some patients have told me that they feel “written off”. This sense of being ignored and left behind can mean they are less likely to seek help or engage with research that could help them.’

The commission suggests better patient-health professional communication is a crucial intervention that can improve quality of life, body image, and adherence to therapy – with positive impacts on survival.

Patients' attitudes to terminology 

Cancer 'survivor': 'I’m not a survivor as I still need monitoring. I see myself as have lived through cancer and it’s changed my life forever. I’m now a different person with a different perspective and I will live with its consequences forever. It’s the gift that keeps on giving!'

Cancer 'survivor': 'I hate the whole battle analogies of cancer. It’s a disease not a battle. Also cancer survivor is derogatory to stage IV patients, as the implication is that they have somehow failed.'

'Palliative care': 'I associate this term with end of life, although I now know this not to be correct.'

'Palliative care': 'I find it hard to shake off the end of life meaning. I think a new name should be found, but the services should be available to all patients with breast cancer who need them.'

Better communication will boost patient outcomes

Many patients describe a diagnois as robbing them of power, and the authors stress that communication styles that empower patients can be an important intervention. A review of research by the commission suggests that better communication with patients can improve quality of life, decision-making, body image, and even adherence to therapy – with positive impacts on survival.

Reshma Jagsi, who is based at Emory University School of Medicine in the USA, said: 'Women’s fundamental human rights have historically been accorded lesser respect than men’s in all settings, with implications for patient agency and autonomy.'

Professor Jagsi noted: 'Every healthcare professional should receive some form of communication skills training. Improving the quality of communication between patients and health professionals, though seemingly simple, could have profound positive impacts that extend far beyond the specific setting of breast cancer management. Patients should be encouraged to exercise their voices, choosing their level of involvement in care decisions.'

Every healthcare professional should receive some form of communication skills training. Improving the quality of communication between patients and health professionals, though seemingly simple, could have profound positive impacts ... [Reshma Jagsi]

Training for all health workers

The Commission recommends that every healthcare professional in every country should receive communication skills training. Patients should be involved in all stages of clinical research on breast cancer – from conceptual phases to findings being translated into clinical practice.

To support these transitions, the report outlines a framework based on strategies to build rapport and empathy, share information, check understanding, and jointly agree next steps with patients.

To access the full version of The Lancet Breast Cancer Commission report and related materials, click