Introduction

Once individuals with cancer have completed their treatment, they enter an uncertain time: Am I cured? Will it come back? What now? It is vital to understand that when cancer treatment ends, it doesn’t mean the end of the ‘cancer experience’ for the patient. Patients who have had a cancer diagnosis experience multiple ongoing problems which require psychological, social and economic adjustment and self-management of altered physical functioning long after the completion of cancer treatment and they require long-term support.

Due to the older population being more susceptible to cancer, many patients with cancer have other co-morbidities and many of them will be admitted to acute clinical areas or be cared for in the community setting at some point in their life. For instance, they may be admitted for a non-cancer-related health issue such as cardiovascular disease or a respiratory problem or for a surgical procedure such as a hernia repair.

Therefore, it is highly likely you will meet and care for people who have had, or still have, a diagnosis of cancer on a variety of placements, as well as throughout your nursing career wherever you decide to work as a qualified nurse. So it is important that you understand what these individuals might have experienced and consider how they might still be affected, in order to provide support and care.

The general public frequently associate a diagnosis of cancer with death. In reality, the situation is often very different. Health policy in the UK has focused on prompt diagnosis and national equity of evidence-based treatment, resulting in earlier cancer detection and wider availability of effective cancer treatments, thus reducing the mortality rates (DH 1995, 1998, 2000, 2004). Consequently, the UK is experiencing increasing numbers of individuals surviving a cancer diagnosis and treatment (5-year survival = 56% for women, 43% for men; 10-year survival = 52% women and 39% men (Office for National Statistics (ONS) 2007)).

There are currently 1.6 million people living in England with a cancer diagnosis. This number is predicted to rise by over 3% per year (ONS 2008). By 2030, it is estimated that over 3 million people will be living with or beyond a cancer diagnosis in England (DH et al 2010). This increase has significant implications for individual patients and for the health service in terms of how this group of patients can best be managed and supported in the longer term.

Cancer is increasingly becoming a chronic disease, characterised by intense treatment, remissions and long periods of outpatient follow up (Dennison & Shute 2000). Once active treatment is complete and patients return home, contact with healthcare professionals diminishes and family members are increasingly required to contribute to the patients’ physical and psychological management. This demanding role often results in physical and emotional repercussions for the lay carer (Badr & Carmack Taylor 2006).

Although many cancer survivors return to previous employment and lifestyles, attempting to put the cancer diagnosis and cancer treatment behind them, there is a higher incidence of chronic illness and disability in cancer survivors compared with those without a cancer diagnosis (Sugimura & Yang 2006). Patients may experience physical and psychosocial problems that result from the disease itself or its treatment. Some problems have a time limit, others persist, while others may not appear until months or years later (Cooley 2000). Currently, the long-term effects of cancer treatment are not systematically identified or recorded; there are few diagnostic or integrated care pathways linking changes in health resulting from the consequences of cancer treatments and few specialist services are available for those with ongoing complex needs.

The concept of survivorship

So when does someone become a ‘cancer survivor’? Traditionally we have thought of survivorship, in terms of the medical end point of treatment and when the patient is discharged from hospital follow-up care, at either 1 or 5 years. However, in reality, these time points are irrelevant to the patient and do not reflect the ongoing consequences of the disease and treatment. The National Coalition for Cancer Survivorship (1986) considers that an individual is a cancer survivor from the time of diagnosis, through the balance of his or her life. Family members, friends, and caregivers are also impacted by the survivorship experience and are therefore included in this definition. This definition highlights that it isn’t just the patient who is affected by the consequences of cancer and its treatment, and that these consequences commence from the time of symptom presentation or diagnosis and continue throughout the duration of an individual’s life. Mullan (1985) proposes that survivorship is transitional, rather than a series of distinct stages, and there are three phases of survival: acute (during the diagnostic phase); extended (when treatment is over); and permanent survival. To date, there has been a lack of attention given to the extended phase of post-treatment and very little exploration of what are the best strategies to support these patients through the transition of these phases.

Much of the literature and research has been completed in the USA and is referred to as ‘survivorship’. Patients in the UK tend to dislike this label, as it implies victim status. For this reason, the phrase ‘living with and beyond cancer’ has be adopted (Macmillan Cancer Support 2008a, DH et al 2010).

The transition from acute care and treatment into follow up

Patients often experience negative emotions towards the often abrupt withdrawal of intensive support (from healthcare professionals, family and friends) once treatment is complete. This is often associated with ambivalence to discontinuation of treatment, signifying the loss of a security blanket (Moore 2011). Paradoxically, the post-treatment period is idealised by family and friends who attempt to persuade the individual they are lucky and encourage them to ‘get back to normal’. Although patients convey a need to resume life, there is recognition and frustration that life before cancer cannot be resumed and patients and carers may feel confused when feelings of anxiety and depression linger after the patient has been told treatment has been successful. Rather than ‘getting back to normal’, patients need to adjust to a new situation and, although the cancer may have physically been removed, the effects of cancer and treatment as well as feelings accompanying the experience may not leave them.

The end of treatment is associated with a number of transitions for patients and their families as they shift from the ‘long haul’ of active treatment to a state of limbo. Without the continual hospital visits, an individual may have more time and opportunity to reflect on what has happened to them and contemplate what the future may hold. They may start to ask questions such as: What are my chances of having children? Should my family be tested? Will the cancer come back? Why don’t I feel in control? What happens now?

Once treatment has been completed, patients will be seen in an outpatient setting for a ‘follow-up’ appointment. The purpose of this is to review the patient’s physical health and assess the response to treatment. However, the value and purpose of formal follow-up clinic appointments in relation to the management of cancer patients has been debated over the past few decades. Rather than a means of support or providing information, traditionally the emphasis of follow-up appointments has been focused on record keeping, disease surveillance, detection and treatment of recurrence (Torjesen 2010). However, the effectiveness and efficiency of follow-up to detect recurrent cancer has been disputed (Alberts 2007).

Alongside this, the health system is under enormous pressure to ensure people with a suspected cancer are seen by a specialist within a 2-week target of being referred by their GP and patients diagnosed with cancer are treated within 31 days from diagnosis (DH 2004). This has increased the pressure on outpatient follow-up clinics and the appointment time between completing acute treatment and follow up for patients with cancer has lengthened. This affects the support and access to information and reduces the opportunities for patients and carers to ask questions.

Patients report mixed feelings regarding follow-up appointments: it may provide feelings of security and reassurance; reduce physical distress and anxiety; and is a way of providing information regarding prognosis and recovery. Conversely, many patients experience acute anxiety preceding follow-up appointments as they are confronted with fear of recurrence and a reminder of their experience. Often the focus of follow up is on the physical symptoms, largely ignoring psychosocial aspects (Torjesen 2010). It is also argued that due to regimented scheduling, the timing of follow-up appointments rarely coincides with patients experiencing anxiety and the need for questions to be answered. Patients often feel unable to contact healthcare professionals for information in between appointments or don’t know who to ask for help.

Follow-up appointments are set in busy hospital clinics and are of a short duration, limiting the time available for patients to express concerns or seek information regarding rehabilitation and recurrence, and therefore are unlikely to provide the level of reassurance and support that patients need. Follow up could be initiated by the patient and should be driven by an assessment of the patient’s need for support, rather than stipulated by protocol (Torjesen 2010). Patients may benefit from a ‘debrief’ by the treatment team at 1 and 6 months after the completion of treatment to discuss and clarify what happened (Johansson et al 1992). Telephone follow up has been shown to be acceptable and more convenient to patients. Phone calls are prearranged and made by a nurse specialist to find out about patients’ progress and answer any questions they may have (Cox & Wilson 2003). These options are currently being explored by the National Cancer Survivorship Initiative task force (DH et al 2010). This is discussed later.

The potential long-term consequences of cancer and its treatment

The supportive strategies required by those living with and beyond cancer to live a healthy and active life

In order for patients and family members to adjust, they need to understand their situation and identify coping strategies to self-manage the functional, socioeconomic and emotional consequences of cancer and its treatment.

Healthcare professionals need to look beyond acute treatment and provide support and information outlining what to expect in terms of late side effects; how long these symptoms might persist; what rehabilitation services and strategies are recommended; what benefits they are entitled to; what signs and symptoms of recurrence to look for; and, overall, who, when and where to seek advice from.

More challenging is how to manage the unanswerable questions such as ‘Am I cured?’ and ‘Will it come back?’ Llewellyn et al (2008) suggest that it is impossible to eliminate uncertainty and fear of recurrence, but by developing patients’ cancer knowledge, they can manage using emotional and problem-based coping strategies. This suggests the need to evaluate the current focus of health care and a shift in attitudes and approaches is required to support individuals beyond cancer treatment. All healthcare interventions should have the long-term interest of patients as the focus point (Doyle 2008).

To date, there has been little policy recognition of the concept of survivorship or how best to support patients beyond the acute phase of treatment. The Cancer Reform Strategy (DH 2007) is the first policy setting out a commitment to improve patients’ experience of living with and beyond cancer. From this report, the National Cancer Survivorship Initiative (NCSI) was established. The NCSI vision (DH et al 2010) sets out to determine the possible approaches to survivorship care and how these can best be tailored to meet individual patients’ needs. This work focuses on creating long-term holistic assessment and care planning, ensuring that post-treatment care is practical and sustained. A single record of treatment is proposed, written intelligibly for patients outlining the basis of conversations about their care and a summary of the type of cancer; what procedure/treatment they had received; what to expect immediately post-treatment; what the consequences of treatment might be in the medium to long term; what patients can do optimise their recuperation and recovery; how long side effects and symptoms may last; what signs and symptoms of recurrence to watch for; and how they would be followed up.

There remain significant discrepancies between the ideas of patients, GPs and oncologists of which healthcare professional should follow patients up. Some patients desire follow-up care with their consultant (Cheung et al 2009). However, many patients are not seen by the consultant in follow-up care. Other patients prefer to be followed up by their GP as they know their case more thoroughly than anyone and the patient has easier access to them. However, patients perceive that the GP may not actually possess the in-depth specialist knowledge and skill to provide care. A GP ‘review and recall system’ is also proposed, ensuring appropriate, patient-specific, primary care for cancer survivors. GPs perceive themselves to have a central role in follow up, disease surveillance and screening for other cancers (Cheung et al 2009).

However, currently no healthcare professional role facilitates self-management by empowering and enabling patients and carers to identify resources and skills to self-manage. Medical roles focus on cure and managing the immediate effects of treatment and disease surveillance. There are very few community-based rehabilitation services.

The NCSI proposes the role of a dedicated key worker, who could work in partnership with individual patients, assessing and identifying their needs from diagnosis through to follow up, and collaborate and communicate across all service providers (not necessarily based at the hospital) as a central coordinator, directing patients to other specialist healthcare professionals. However, this would be logistically challenging within the current infrastructure and financial situation of the NHS, and considerable research, redirection of resources and redesign would be required.

Nevertheless, a new model of transitional care is required to ensure that acute and primary care services effectively manage and provide long-term, consistent, reliable care based on individual need. As healthcare professionals, we have a responsibility to provide information and support to individuals living with and beyond cancer to enable them to self-manage the significant physical, socioeconomic and emotional effects of the disease and it treatment, as wells as adopt healthy lifestyle behaviours.