New research has revealed disturbing gaps in communication, information and fairly basic support for patients with secondary (metastatic) breast cancer according to researchers at Brighton and Sussex Medical School (BSMS). These gaps must be addressed if patients are to benefit from the longer survival that the new more effective treatments might offer them.

A survey conducted by Sussex Health Outcomes Research & Education in Cancer (SHORE-C) at BSMS and funded by the secondary breast cancer charity Make 2nds Count, concluded that as more people now have a genuine chance of surviving for longer, better formal and informal support is needed to enhance and maximise the quality of that extra survival time. 

Professor Dame Lesley Fallowfield, Professor of Psycho Oncology at SHORE-C, BSMS and lead author of the study, said: “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.”  

An estimated 61,000 people in the UK are currently living with secondary breast cancer (also known as metastatic, stage IV or advanced breast cancer) – this means that the cancer has spread beyond the breast to other parts of the body. Secondary breast cancer claims 1,000 lives each month in the UK, an average of 31 deaths daily.

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 three-quarters (71%) of respondents wished they had known more about secondary breast cancer before their diagnosis and, shockingly, nearly half (47%) said they still did not fully understand their illness. Only 56% had access to a specialist nurse and even fewer (51%) had been offered any additional support. 

The women said little consideration was given to their lifestyle or culture during consultations and information, support services, continuity of care and access to clinical trials were inconsistent. 

The study concluded that secondary breast cancer caused “a deleterious impact upon patients’ activities of daily living which were exacerbated in part by significant gaps in support, communication and information.” 

The results reflected the experience of Alison Tait, a patient who took part in the survey. She said: “I've been living with secondary breast cancer for seven years. It's a terrifying diagnosis as although it may be controlled for periods of time it cannot be cured. It's a life-limiting condition. I'm 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. It can be a very lonely place." 

The study, published in the scientific journal Supportive Care in Cancer, is available to read. 

Members of the SHORE-C research team led by Professor Valerie Jenkins have already used some of the findings from the survey in a film aimed at helping the families and friends of patients called ‘They Just Don’t Know What to Say or Do’. The film uses actual quotes from the answers that patients in the survey gave to the question ‘What did family or friends say or do that helped or hindered?’. Professor Jenkins said: “Unfortunately even individuals who may care deeply and wish to be helpful often do not know what to say or do when someone has disease which, although still treatable, can no longer be cured. Their actions and words can make their loved ones with cancer feel hurt, misunderstood or abandoned.” In the film Professor Fallowfield discusses these problems with Lesley Stephen, a mother of 4 children, who was diagnosed with secondary breast cancer in 2014 and given a life expectancy of one to two years.

This film was supported via the Gilead UK and Ireland Fellowship Programme and Breast Cancer Research Foundation (BCRF), and you can watch it now.