New research has revealed gaps in support for patients with metastatic breast cancer. This lack of help is partly to blame for magnifying the damaging impact of the incurable disease, according to researchers at Brighton and Sussex Medical School (BSMS).
The scientific research funded by Edinburgh-based secondary breast cancer charity Make 2nds Count, the Living with Metastatic Breast Cancer (LIMBER) study concluded that as more people now have a real chance of surviving for longer due to improved treatments, they should also have better information and support services to enhance their quality of life.
“Much is made about the advances in new breast cancer treatments for patients with advanced disease, but less about the vital good supportive care needed from all around them – their healthcare professionals, family and friends,” said lead author Professor Dame Lesley Fallowfield, professor of psycho-oncology at Sussex Health Outcomes Research and Education in Cancer, BSMS. “This survey highlights disturbing gaps in communication, information and fairly basic support if patients are to benefit from the longer survival that effective treatment might offer them.”
The survey looked at the experiences, information, support needs and quality of life of women with the disease in order to provide content for educational materials. The results revealed that almost 71 per cent of respondents wished they had known more about secondary breast cancer before their diagnosis while
47 per cent said they still did not fully understand their illness. Only 56 per cent had access to a specialist nurse and 51 per cent had been offered additional support. Respondents said that little consideration was given to their lifestyle or culture during consultations while information, support services, continuity of care
and access to clinical trials were inconsistent.
The results reflected the experience of Alison Tait, a patient who took part in the survey. She said: “I have been living with secondary breast cancer for seven years. It is a terrifying diagnosis as although it may be controlled for periods of time it cannot be cured. I am lucky to have an empathetic, professional clinical team managing my treatment but find that few people outside of this are able to communicate supportively with me about my health.”
The research team is in the process of developing educational materials based on their findings, including a film called ‘They just don’t know what to say or do’ exploring how friends and family can better support those living with secondary breast cancer.
Picture: Lead author Professor Dame Lesley Fallowfield and patient Alison Tait.
Published on page 14 of the September 2023 issue of RAD Magazine.