Report highlights inequalities and hidden suffering among people living with breast cancer

Report highlights inequalities and hidden suffering among people living with breast cancer

Many people with breast cancer ‘systematically left behind’, say researchers

Woman wrapped in white towel checking her breast for signs of cancer

Experts predict 3 million new cases a year of breast cancer worldwide by 2040 and a million deaths, with people living in low- and middle-income countries disproportionately affected. Despite major advances in the diagnosis and treatment, inequalities mean that many women worldwide still experience significant suffering related to physical symptoms, emotional despair, and financial burden.

These are among the conclusions of the new Lancet Commission, led by Professor Charlotte Coles from the University of Cambridge, which sets out recommendations to tackle these urgent challenges in breast cancer. The Commission builds on previous evidence, presents new data, and integrates patient voices to shed light on a large unseen burden.

"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."

Professor Charlotte Coles, University of Cambridge and Cambridge University Hospitals NHS Foundation Trust

Professor Coles added: "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."

At the end of 2020, 7.8 million women were alive having been diagnosed with breast cancer in the previous five years. Progress in research and cancer management has led to a decrease of over 40% in breast cancer mortality in most high-income countries. Estimates suggest that global breast cancer incidence will rise from 2.3 million new cases in 2020 to over 3 million by 2040.

Although breast cancer is the most common cancer, gaps in knowledge continue to prevent effective action.

Professor Charlotte Coles talking to a colleague

Professor Charlotte Coles

Professor Charlotte Coles

A young breast cancer patient being helped by her male partner

Lack of information on number of people with metastatic breast cancer

Even though 20-30% of patients with early breast cancer experience relapse, relapse is not typically recorded by most national cancer registries. Therefore, the number of patients living with metastatic breast cancer is not known. Meeting the needs of an under-measured patient population is difficult, and as a result, feelings of abandonment and isolation are common among those living with the condition.

"Metastatic breast cancer remains poorly understood by the public, policymakers, and even health care professionals. 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."

Lesley Stephen, collaborator and patient advocate

Lesley added: "Patients with metastatic disease need more support and information in order to feel valued."

In the last decade, metastatic breast cancer outcomes have improved considerably. The median overall survival for the two major subtypes, which include approximately 85% of metastatic breast cancer patients, has reached five years where recommended therapies are made available. In a Commission survey of 382 healthcare professionals, more than half (55%) agreed that specific subtypes of metastatic breast cancer may become curable, and three-quarters agreed that it will become a chronic disease.

The authors make a case for a minimum of 70% of registries worldwide to record cancer stage and relapse. These data could drive significant improvements in metastatic breast cancer care, outcomes, and emotional wellbeing among patients. Initiatives that promote societal inclusion of people living with metastatic breast cancer are also paramount; for example, changes to labour market laws that empower more flexible working arrangements. With a shift in perception, it may be possible to treat most, alleviate suffering for all, and forget no-one living with the disease, the Commission argues.

The hidden costs of breast cancer

The associated costs of breast cancer – including physical, psychological, social, and financial costs – are immense but under-recognised. Many of these costs are not captured by current global health metrics.

In response, the Commission established a UK-based pilot study that 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 stated physical or well-being issues related to breast cancer. One participant described losing their job as as result of being unable to cope during chemotherapy, while another experienced sexual dysfunction but found it difficult to ask for help.

Additionally, a fifth of participants with early breast cancer and a quarter of those with metastatic breast cancer reported difficulty in covering the costs of travel for treatment. 27% with early breast cancer and 35% with metastatic breast cancer said 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.

Building on previous work, the Commission report also discusses serious health-related suffering, an indicator of the need for palliative care, with estimates provided by a small expert group. In 2020, an estimated 120 million days were spent with serious health-related suffering per year for people who died of their cancer. A further 520 million days were estimated for patients living with the disease. Behind these numbers are individuals experiencing pain, shortness of breath, fatigue, and other, often resolvable, distressing symptoms.

"Even in countries with well-developed health care systems, patients with breast cancer experience inadequate support and care. In countries lacking affordable health care facilities, patients experience these costs more commonly and intensely, too often leading to catastrophic spending and impoverishment."

Dr Carlos Barrios, Oncology Research Center, Hospital São Lucas, Brazil

The Commission advocates the development of new tools and metrics that capture the many costs associated with the disease. This measurement should guide policymakers to invest in breast cancer prevention, early detection, cost-effective therapy, optimal management, financial protection, and other interventions that relieve suffering.

Portrait of a breast cancer patient looking at the camera
Breast cancer patient speaking to a healthcare worker

Better communication for better patient outcomes

Many patients describe breast cancer as robbing them of power. Therefore, healthcare professional-patient communication that empowers is highlighted by the authors as an important intervention. A review of research by the Commission suggests better communication with patients can improve quality of life, decision-making, body image, and even adherence to therapy – with positive impacts on survival.

"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."

Professor Reshma Jagsi, Emory University School of Medicine, USA

Professor Jagsi added: "Patients should be encouraged to exercise their voices, choosing their level of involvement in care decisions."

The Commission calls for every healthcare professional in every country to receive communication skills training and for patient involvement in all stages of clinical research on breast cancer – from concept to translation 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.

Collaborate to improve prevention and early detection 

Up to a quarter of breast cancer in high income countries could be prevented by modifying risk factors for breast cancer. While education and awareness-raising efforts are important in this respect, bold policy changes that minimise population exposure to modifiable risk factors (including alcohol consumption, being overweight, and physical inactivity) are vital to reduce cancer incidence, suggests the Commission.

In addition, systematic approaches that identify those at increased risk of the disease are essential to enable equitable access to personalised prevention strategies, including cheap and effective medications that can avert breast cancer for many women.

The authors also argue for improved early detection programmes, beginning with efforts to promote stage shifting in diagnosis so that at least 60% of confirmed invasive cancers are early disease (stages one or two).

"Access to evidence-based prevention and care that isn’t dependent on where an individual lives or their ability to pay would reap wide-ranging benefits for patients, families, and health care systems striving to achieve universal health coverage."

Professor Benjamin Anderson, Departments of Surgery and Global Health, University of Washington, USA

Young breast cancer patient undergoing a mammogram

Published 16 April 2024

Adapted from a press release by The Lancet.

Coles, CE et al. The Lancet Breast Cancer Commission. Lancet; 15 Apr 2024; DOI: 10.1016/S0140-6736(24)00747-5