Many people with breast cancer are being “systematically left behind” due to inaction on inequities and hidden suffering, experts have said.

A new global report suggests people with the condition are continuing to face glaring inequalities and significant adversity, much of which remains unacknowledged by wider society and policymakers.

The Lancet Breast Cancer Commission highlights a need for better communication between medical staff and patients, and stresses the importance of early detection.

It also highlights the need for improved awareness of breast cancer risk factors, with almost one in four cases (23%) of the disease estimated to be preventable.

Breast cancer is now the world’s most common cancer, and at the end of 2020 7.8 million women were alive having been diagnosed in the previous five years.

In the same year, 685,000 women died from the disease.

Estimates suggest global breast cancer incidence will rise from 2.3 million new cases in 2020 to more than three million by 2040, and one million deaths from the disease per year are projected by 2040.

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

For example, the number of people living with metastatic breast cancer (MBC) – cancer that has spread to other organs – is not known, hampering the provision of treatment and care.

Even though 20%-30% of patients with early breast cancer experience relapse, relapse is not typically recorded by most national cancer registries, and therefore the number of patients living with MBC is not known.

The Lancet Commission’s lead author, Professor Charlotte Coles, department of oncology, University of Cambridge, 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 healthcare professionals and policymakers in partnership with patients and the public around the world.”

The commission also warns of the social and emotional impacts of breast cancer on patients, many of which, it argues, are not adequately measured.

Additionally, the commission carried out a pilot study, funded by Breast Cancer Now, which analysed the financial costs of breast cancer both to individual people and to the wider economy.

The study – which limited its scope to the UK to assess these impacts in a country where healthcare is free at the point of use – found many people experienced a fall in income, job loss and difficulty paying for travel costs to treatment following a diagnosis of breast cancer.

The new report argues these costs remain largely unacknowledged by policymakers and society, and it also warns of the social and emotional impacts of breast cancer on patients, many of which, the commission argues, are not adequately measured.

Breast Cancer Now says that as a result of decades of campaigning, a secondary breast cancer audit is now happening in England and Wales to collect and analyse essential data.

Although the first data has recently been published, information on stage of diagnosis for patients is incomplete and it does not include data on patients in Wales, the charity says.

It adds that despite cancer strategies in Scotland and Northern Ireland committing to improve data collection for secondary breast cancer, this has not yet been delivered.

Dr Simon Vincent, director of research, support and influencing at Breast Cancer Now, said:  “Despite the incredible progress we’ve made in the prevention, detection and treatment of breast cancer over the last few decades, the Lancet Breast Cancer Commission, part-funded by Breast Cancer Now, highlights how much more still needs to be done for those living with this disease.

“Screening uptake is continually falling short of the 80% achievable target and long waiting times that are often driven by workforce shortages are preventing many women from starting potentially life-saving treatment quickly.

“We often hear from people living with incurable secondary breast cancer that they feel overlooked and forgotten, and the devastating reality is that the insights so desperately needed to improve their treatment and care will remain out of reach until accurate and complete data collection is prioritised and implemented across the UK.”

He added: “We hope governments and policymakers both around the world and here in the UK will acknowledge the commission’s roadmap for change and take urgent steps to improve support and treatment for people living with breast cancer.

“We look forward to seeing the impact of this report as we strive to achieve our ambition that by 2050 everyone diagnosed with breast cancer will live and be supported to live well.”