Living with secondary breast cancer: coping with an uncertain future with unmet needs

Despite significant advances in the diagnosis and treatment of breast cancer, approximately one third of women still develop, and subsequently die from metastatic breast disease. Globally, half a million deaths each year are attributable to metastatic breast cancer, and the median survival time from diagnosis of secondary disease is approximately 3 years. The range is very wide however, with some patients having more indolent disease living for 10–15 years in some cases (Johnston and Swanton, 2006). In part this reflects the biological diversity of the disease, with some women having extreme sensitivity to hormonal treatments in endocrine-sensitive breast cancer and others, with so-called triple negative breast cancer displaying relative resistance to all systemic therapies. In addition, the disease may manifest different patterns of metastatic spread. These range from limited bone metastases to widespread and life-threatening metastases in visceral organs such as the liver, lung and brain.

While recent years have witnessed substantial developments in various systemic therapies which have improved the outlook for many women with breast cancer, the fact remains that at present, secondary breast cancer cannot be cured. As such, the socioeconomic and psychological impact of the condition and its management is a major health problem for many reasons. The high prevalence of the disease and relatively long natural history for many patients means that in the UK, approximately 100,000 women are living with a diagnosis of secondary breast cancer each year. However, for these women the true impact of living with an incurable condition and coping with an uncertain future is something that often goes unrecognised by healthcare professionals.

Compared with the information and support provided to women diagnosed with primary breast cancer, many women who are given the devastating news that they have secondary breast disease complain that similar services are not available once they reach this stage in the disease trajectory, one woman quoted by the Secondary Breast Cancer Taskforce stating that: ‘I would have liked to have been given the same amount of time and consideration as I had been at primary diagnosis. After all with a primary diagnosis you can live in the hope that after initial treatment it will never return. With secondaries you know it will never go away. You need help to let you live with it for as long as possible in the best possible way.’ As such, levels of psychological distress in these women with a diagnosis of secondary breast cancer are often much higher (Mahon et al., 1990). The distress of living with an incurable condition, together with the complexity of different treatment options and the unpredictable course of the disease often combine to leave women feeling vulnerable with no sense of control over their fate.

This issue of Journal contains two feature articles which address some of the problems faced by women who are given a diagnosis of secondary breast cancer, and identify the relatively inadequate support services that they currently receive. Reed et al. (2010) surveyed over 270 breast care nurses in the UK to determine the level of support that is currently being offered to women once they are diagnosed with secondary breast cancer. They found that over half of the breast care nurses who provide care for women with secondary breast cancer feel that current levels of support are inadequate, and that as primary breast care nurses, they feel ill equipped to provide the information that these women often need. Warren (2010) reviewed the published literature to establish what is known about the main issues affecting those living with a diagnosis of secondary breast cancer and found that uncertainty, lack of control and poor emotional functioning emerged as common themes in the papers reviewed. These are compounded by inadequate support and information provision from healthcare professionals. Both articles indicate that there is substantial room for improvement in the levels of information and support which are currently provided to women with secondary breast cancer.

So what can be done to improve the situation? In May 2006, The Secondary Breast Cancer Taskforce was established by the UK Charity Breast Cancer Care as a result of increasing reports from women living with metastatic breast cancer that they felt neglected as a patient group. In particular they identified a marked contrast between the levels of care and support received during their treatment for primary breast cancer and those received following a diagnosis of secondary breast disease. The Taskforce consisted of oncologists, palliative care professionals, clinical psychologists, secondary breast care nurses, support group facilitators, patients, counsellors and primary care clinicians. As such it was a national coalition consisting of representatives from all the disciplines involved in caring for and influencing the care of people with metastatic breast cancer.

The final Taskforce report was published in 2008 and identified the gaps in treatment and support for women with secondary breast cancer. In particular the report outlined a set of 35 recommendations aimed at improving care and information for such women, citing examples of best practice. Access to appropriately trained clinical nurse specialists was identified as a key recommendation, such that in every patient's clinical team there should be a healthcare professional with the skills and knowledge needed to manage metastatic breast cancer. This person should act as the patient's ‘key worker’, coordinating their care, acting as their advocate and providing appropriate support and information. As such the gold standard would be the creation of a dedicated secondary breast cancer clinical nurse specialist within every breast care team (Leadbeater, 2006). Reed et al. identified that prior to the Taskforce in 2006 only 5 such specialist nurses existed within the UK. However, many NHS Trusts have responded to the needs of these patients, and their survey identified that there are now 19 such posts across the country. While this represents a major step in the right direction, many more posts are clearly required.

Despite current financial constraints within the NHS, the Taskforce recommended that cancer services should be configured to provide optimal multi-disciplinary care for women with secondary breast care. At present medical / clinical oncologists co-ordinate care, although women often feel that their lives revolve around treatment plans and waiting for results (Nelson, 1996) which creates a feeling of uncertainty and lack of control over their lives (Turner et al., 2005). In many centres, secondary breast cancer is managed in general oncology clinics or within breast oncology clinics which also serve women with early breast cancer or those receiving regular follow-up. The same breast care nurse who sees a woman with newly diagnosed breast cancer contemplating the option of mastectomy may then be responsible for assessing the needs of a young woman with incurable liver and bone secondaries. While both women have breast cancer, the psychological issues and information needs are vastly different, and recognition of this should allow dedicated resources to be channelled more appropriately.

The principal aim of treatment for secondary breast cancer is to increase the duration of symptom-free survivorship and limit treatment-related toxicity and therefore ensure the maximum quality of life for the majority of patients. It is acknowledged that metastatic breast cancer can affect many parts of the body, and this requires a wide range of treatments to control local symptoms. It is strongly recommended therefore, that these patients are managed by a specialist, multidisciplinary secondary breast cancer team which works closely with palliative care specialists and associated medical specialities as required.

Outcomes for women with secondary breast cancer continue to improve, giving genuine grounds for optimism despite the feelings of uncertainty and loss of control that many women feel. A significant number of patients can derive benefit from the various treatments that are now available, with improvement in disease-related symptoms and a net gain in quality of life. These facts are crucially important when discussing the aims of treatment with patients first diagnosed with secondary disease and defining the best parameters by which to judge success or otherwise of any treatment intervention for each individual. Furthermore, the introduction of novel targeted therapies, in particular biological therapies such as trastuzumab for HER2-positive disease, has altered the natural history of advanced breast cancer, with an unprecedented impact on survival from such treatments. As such, it is likely that many patients will now live considerably longer with their secondary breast cancer under control, although cure in this setting still remains an elusive goal. In addition to supplying appropriate anti-cancer drugs to fight the disease, it is equally important to provide high quality information and appropriate support to secondary breast cancer patients who feel vulnerable and uncertain about their future. Allowing patients the time to understand their disease empowers them to take control and participate together with their health care professionals in making decisions about their management plan.

Survivorship with a good quality of life applies equally well to those with incurable secondary disease as it does to those diagnosed with curable early breast cancer. Learning to live with secondary breast cancer is a realistic and achievable goal, but only so long as there are appropriate numbers of nurses capable of providing the specialist interventions which these women need. The recruitment and training of specialist nurses for patients diagnosed with secondary breast cancer must be a priority therefore, and this should be done with all possible haste if current disparities in the level of support that these women experience are to be eradicated.