What do women with advanced breast cancer want from their treatment?

Introduction

'We are what the pink crowd want to forget because we are the painful reminders of what can happen.' [1]

The implications for those who are diagnosed with advanced breast cancer are enormous, as they negotiate the transition from a potentially curable disease to an incurable and life-threatening condition. Davies and Sque [2] have identified that women with advanced breast cancer feel that their healthcare professionals have a limited understanding of their emotional predicament, which exacerbates their isolation and suffering. Literature on the needs of women with metastatic breast cancer is emerging, so it is timely to ask how health professionals should respond to these needs and to ask what they should be providing for women with advanced breast cancer.

The course of advanced breast cancer is highly variable, meaning that some women may live for extended periods, often with good quality of life. Current data from the UK suggest that improvement in treatment means that women who are diagnosed with advanced breast cancer now live longer than previously, with 51% of those diagnosed being alive at 3 years [3]. However, life is coloured by the reality of disease progression and treatment, punctuated by periods of wellbeing and relapse and by anxiety, sadness and uncertainty. These women live with a sense of limited time and what that means for themselves and their families.

It is difficult to gain a true understanding of the size of this problem as data on the number of women who are diagnosed with metastatic or advanced breast cancer are not collected. In the UK 46,000 women are diagnosed with breast cancer each year, of whom 30% will eventually be diagnosed with metastatic disease [4]. It has been estimated that there are 550,000 women alive in the UK who have had a diagnosis of breast cancer [5], and around 12,000 women die per year of the disease [6], but it is not known how many women are alive with metastatic disease. Despite incomplete data, it is clear that there is a large and significant number of women living with metastatic breast cancer whose needs should be understood and provided for.

While healthcare services are well placed to provide care for women undergoing screening and treatment for early-stage disease, there is little in place to provide for women with advanced disease. An audit of care in one Australian centre found that of 842 women with breast cancer seen by the breast care nurses, only 7% had advanced breast cancer, despite the fact that women with advanced cancer made up 35% of breast cancer cases in the hospital [7]. The model of care for breast care nurses worldwide is focused on primary treatment, despite the fact that it has been known for a long time that the diagnosis of advanced breast cancer is more distressing than the original diagnosis [8]. It cannot be assumed that the care of these women is being transferred to the community as Gagnon et al. [9] found little evidence of GP involvement with women with advanced breast cancer, even when the patient is nearing death. Furthermore, their retrospective analysis of 2291 women who died of advanced breast cancer found evidence that only 25% of women had received any palliative care in the last 6 months of life. Seventy per cent of women died in acute hospital beds and only 7% died at home [9].

The needs of women with advanced breast cancer

One way to address what women with breast cancer want from their treatment would be to ask what needs they are expressing. It has been assumed that their symptom burden as a result of their disease is their primary need, and that active treatment can reduce this symptom burden. It has been shown that symptoms are important to women with advanced breast cancer. Table 1 shows the results of an online survey of 618 women with advanced breast cancer, which found that women had high rates of often multiple symptoms [1]. The most commonly reported symptoms were fatigue (92%), insomnia (84%), pain (79%) and hot flushes (79%). While this survey was a self-selected group and particularly high levels of symptoms were reported, other research supports the presence of high symptom burden in this group. Desanto-Madeya et al. [10] also describe pain, sleep disturbance and nausea as common and Luoma and Hakamies-Blomqvist [11] describe how women said that, for them, fatigue, weakness and pain were the worst symptoms. In addition, previous research on affective disorders has suggested that around 35% of women with advanced breast cancer have anxiety and/or depression warranting psychosocial intervention [12,13]. Kissane et al. [14] suggest that the rates of psychological distress are similar in advanced disease to those found in early-stage breast cancer but that the causes of the distress are different. As death approaches, depression and anxiety also increase, being found in 50% and 66% of women respectively [15,16].

Pain is also a problem. Arathuzik [17] found that the majority of women with pain due to advanced breast cancer experienced moderate to severe pain, and two-thirds of respondents would have benefited from stronger analgesia on a regular basis. It was also found that some women tolerate pain for fear of addiction to analgesics, but that they do not know where to turn for help with pain control and are reluctant to complain to their healthcare professionals [17]. As well as being important to treat for themselves, mood disturbances and belief about the meaning of pain are also the most potent predictors of pain [18]. It is, perhaps, not surprising to note that pain levels have been found to increase significantly as disease progresses and death is nearer [19].

Lack of sleep is mentioned by Koopman et al. [20], who found that 63% of women with advanced breast cancer reported sleep disturbance. They were more likely to have sleep problems if they were in pain, depressed, had bone metastases or a lack of social support. As there is adequate treatment available for many of these problems, Aranda et al. [21] suggest that the continuing high levels of symptom burden indicate that treatable symptoms are not being appropriately assessed and treated. Mood problems are particularly poorly assessed and there is little evidence of referral to appropriate support services [22].

Despite this high level of untreated symptom burden, when asked to identify their primary needs, women with advanced breast cancer have reported their priorities to be psychosocial support and health information [21]. Women describe difficulty communicating with health professionals [23], who are in a different world paradigm [24]. The women's paradigm is existence, life and death, whereas the caring staff are perceived by women as treating the physical body from a biomedical perspective [24]. This results in the women feeling abandoned and disappointed, increasing their suffering. As their worries change from concerns about cancer recurrence to self-care and control issues [21], they need to understand their own cancer history and treatment options [25]. One study found that the way in which the diagnosis of metastatic disease was handled was a source of anger and dissatisfaction for many women, with 61.2% saying that they would like to see changes in communication [23]. Mayer and Grober [1] found that women with advanced breast cancer seek information frequently, from sources such as the internet, with 75% seeking it on a daily or weekly basis.

Another major concern is a change in the way women see themselves and adapt to a new sense of self: body image is still a problem despite knowing that death may be approaching [23]. Changes in appearance lead to a further reduction in what women can do, as alopecia and oedema can increase social isolation [11]. Changes in their ability to perform physical functions may precipitate role change, perhaps from care giver to care receiver, resulting in further change to sense of self [11].

Psychological distress is worse in women aged under 55 as the impact of advanced cancer prevents them from doing what they want to do and changes their sense of self [23]. Younger women were also more dissatisfied with communication with clinicians. Turner et al. [23] suggest that a possible cause is clinicians' avoiding discussion of emotional issues with younger women because of the personal distress such contact engenders.

Aranda et al. [21] found that, at recurrence, women's worries turned to concerns for their families, and Turner et al. [23] identified a particular issue of not knowing how to talk to their children. Practical issues also play a large part in women's daily life. Most experience a reduction in physical functioning, yet many find ways to compensate and continue to live full and active lives [10]. However, women ask for assistance with practical issues such as finance [21,1] and even with simple needs such as parking facilities [21].

Ways that women cope

It is tempting to think that healthcare professionals offer treatment for illness and that the way women deal with it is left to the individual. However, it is impossible to separate the diagnostic and treatment processes from the way in which they are delivered, and there is much evidence to suggest that this has a major impact on the way women cope.

Once diagnosed with advanced breast cancer, women have the inner work of adjustment. Their suffering opens existential questions of life and meaning and the proximity of death. The path through the experience of cancer includes periods of extreme vulnerability, openness and deep despair [24]. Women need safe surroundings and compassionate people if they are to find a path through this suffering [24], and some of this is provided in their healthcare setting.

Ways in which women deal with advanced cancer include living as normally as possible, maintaining normal reciprocal relationships and being able to control the illness experience by such means as information-seeking, symptom control, keeping busy and conscious denial (not wanting to know their possible survival time or what would happen after they relapsed) [11]. There is also the possibility of the illness bringing positive effects, such as personal growth and increased self-esteem. Arman et al. [24] also describe this process of increasing self-actualisation and suggest that health professionals find ways to harness this potential for healing. A key to this might be through hope. Luoma and Hakamies-Blomqvist [11] found that hope is central, not for recovery, but for better physical condition and treatment response. Chi [26] found that patients who have a higher level of hope cope with cancer more effectively through active acceptance, normal living and reconciling with life and death.

Women who use a coping strategy of fighting spirit and emotional expression have been shown to have better adjustment to advanced breast cancer, although denial and fatalistic thinking do not appear to increase emotional distress [27]. Helping women to develop their own personal strategy for dealing with advanced breast cancer is therefore a part of the work of healthcare professionals. Some of this is about providing practical information and support, but much of it is about the way in which care and treatment are provided.

Meeting the needs

It is suggested here that what women with advanced breast cancer want from their treatment is increased hope. Some of this may be brought about by the individual patient and their circumstances, but there is much that is dependent on healthcare professionals. They can increase hope by treatment and by symptom control delivered through careful assessment and caring behaviour. Arman and Rehnsfeldt [28] suggest that, in clinical circumstances, a caring encounter could be the answer to the patient's inner need for creation of meaning, hope, and for creatively exploring new ways to adapt.

Caring behaviours such as showing warmth and genuineness, being friendly and polite and using thoughtful gestures, have been shown to increase patients' hope significantly [26]. Hope is supported by being present, giving information and demonstrating caring behaviours. Hope can be raised by taking the time to talk, being helpful, providing information and answering questions in a sympathetic, positive, truthful and respectful manner. Furthermore, hope is not related to disease stage and nor is pain level correlated to level of hope. Conversely, hope can be dampened, depending on the way that healthcare professionals give information [26].

While patients see treatment as the enemy because of its side effects, it also brings hope [23]. Karamouzis et al. [29] also showed that women offered chemotherapy had higher scores for looking towards the future. There is evidence that women find that active treatment not only reduces symptom burden, but that it also increases quality of life in many domains including overall quality of life, sexuality, role and emotional functioning and for specific symptoms, such as fatigue, pain and appetite loss [29]. Furthermore, quality of life domains which might have been expected to be worse in chemotherapy patients, such as hair loss, were not significantly different to those found in a supportive care group, suggesting that patients overall see treatment as improving their quality of life.

As well as increasing hope by the delivery of treatment in a caring way, women want information and practical support [1]. Health information is one of women's priorities [21]: they need information on treatment, side effects and symptoms. Fewer than half of women remembered being offered treatment options at the time their metastatic disease was diagnosed [23]. This may be due to lack of options presented or to their not being receptive to the information at the time. Either cause needs to be addressed, with information being made available in a wide variety of formats so that it can be accessed when needed. The survey by Mayer and Grober [1] showed that women are not always aware of currently available information and support, and the authors suggest that programme coordinators allocate sufficient resources to dissemination as well as preparation of material.

Further ways of helping support women with advanced breast cancer through their treatment and disease progression include counselling and support services [21], practical support such as car-parking and advice on financial matters, and regular monitoring of their personal needs and quality of life. The survey by Mayer and Grober [1] found high levels of support-seeking, with over two-thirds of women finding it helpful to read about, or listen to, the experiences of others. They were also prepared to attend support groups, but wanted them to be facilitated by health professionals and to be based on coping with the effects of the illness and treatment rather than issues about facing death. Despite the need for help with how to talk to their children, they did not rate counselling programmes for children highly, but rather wanted simple advice from their healthcare professionals. The survey demonstrated a need for support to be offered in a variety of ways, with both face-to-face and online support being asked for. Other popular sources of support were stress management, individual counselling, spiritual guidance and peer network programmes.

These findings describe a wide range of ways in which healthcare services can support women with advanced breast cancer. Many of these are required specifically of the specialist clinicians in the hospital and may result in the need for further training, such as helping parents communicate with their children about life-threatening disease. There may also be a need for support and supervision for healthcare staff engaged in emotional work that is personally demanding, to enable them to engage equally with all patients. There is also a need to ensure that there is a clear understanding between health professionals in primary and secondary care as to where the care for women with advanced breast cancer should be undertaken and personal care plans identified so that no individual falls through the gap. The Metastatic Breast Cancer Advocacy Working Group [30] have suggested that institutions address this by having navigator or key-worker services in place.

Conclusion

Women with advanced breast cancer want treatment to enable them to carry on with life as normally as possible and to provide them with hope. However, they still have significant unmet needs, which should be addressed alongside their treatment. These women need to make the transition to living with an incurable disease which will soon lead to their death. They need a safe place to do this and caring and wise people to help them do it. At the moment these needs are not being met as care falls between outpatient and primary care. Better links need to be made between hospitals and primary care, with appropriate and sensitive assessment and care-planning provided. Finally, health professionals may need better preparation and ongoing support to help them provide this care.

References

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Deborah Fenlon (1) and Elizabeth Reed (2)

(1) Macmillan Research Unit, School of Health Sciences, University of Southampton, UK and (2) Breast Cancer Care, London, UK

Correspondence to: Deborah Fenlon Macmillan Research Unit, School of Health Sciences, University of Southampton, SO17 1BJ, UK (email: [e-mail])

Table 1: Symptom prevalence in women with
advanced breast cancer [1]

Symptom                Women affected (%)

Fatigue                     92
Insomnia                    84
Pain                        79
Hot flushes                 79
Cognitive problems          78
Hair loss                   77
Sexual problems             73
Depression                  66
Anxiety                     65
Neuropathy                  60
Loss of appetite            59
Nausea                      55