Breast cancer patient advocates have backed an international call to raise the standard of care for people with metastatic breast cancer and address inequities in access to treatment.
The Breast Cancer Network Australia says the findings of the landmark Lancet Commission on Breast Cancer (link here) are particularly relevant for the overlooked group of Australian patients with metastatic breast cancer.
Published on 15 April, a series of reports from the Commission noted that despite significant improvements in research, treatment and survival, “gross inequities” persist for people living with breast cancer and many patients are being systematically left behind.
“An example of unequal progress in breast cancer relates to patients with metastatic breast cancer (MBC). The number of people living with MBC is unknown and many feel abandoned. Recording relapse in cancer registries to identify those with MBC and shifting negative societal attitudes towards MBC could facilitate optimal support for this patient population,” the Commission’s report noted.
The Commission found that 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 MBC is not known. Meeting the needs of an under-measured patient population is difficult, and feelings of abandonment and isolation are common among those living with MBC as a result,” its report said.
In the last decade, MBC outcomes have improved considerably, the Commission’s report noted. The median overall survival for two MBC subtypes (HER2-positive and ER-positive/HER2-negative), which include approximately 85% of MBC patients, has reached five years where recommended therapies are made available. Some patients may now live 10 years or longer with metastatic disease.
In a Commission survey of 382 healthcare professionals (70% of whom were oncologists; more than half with a clinical focus on breast cancer), 55% agreed that specific subtypes of MBC may become curable, and 75% agreed that MBC will become a chronic disease.
“MBC remains poorly understood by the public, policymakers, and even health care professionals”, said Lesley Stephen, a report collaborator and patient advocate.
“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. A diagnosis of MBC should not stop a person’s contribution to society, but patients with metastatic disease need more support and information in order to feel valued.”
The report 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 MBC care, outcomes, and emotional wellbeing among patients. Initiatives that promote societal inclusion of people living with MBC 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 MBC, the Commission argues.
Call to report cancer stage data
Vicki Durston
Vicki Durston, BCNA’s Director of Policy, Advocacy & Support Services said the report’s recommendations were in line with those contained in a recent BCNA report (link here), which called on Australian Governments to invest in capturing and reporting cancer stage and recurrence data, allowing us to finally count the number of people living with MBC across Australia.
“Although the five-year survival rate for breast cancer is high in Australia, there is still significant equity of access issues, particularly for those with metastatic breast cancer, and people from priority populations including First Nations, LGBTIQ+, CALD, and rural and remote communities,” she said.
The Lancet Commission report also found that there are many hidden costs of breast cancer, even in countries with public healthcare systems. These include financial toxicity but extend to physical, psychological, emotional, and social costs, impacting patients, families, and broader society, she noted.
Ms Durston said BCNA suported the Lancet Commission’s call to better identify the value that society places on “relief of the hidden costs and suffering related to breast cancer and measure the benefits of addressing these”.
“The Lancet report is yet another example of how the global community of breast cancer research, treatment, and advocacy is leading change across all cancers,” Ms Durston said.