**4. Responding to the changing cancer story: Focus on the future**

In the past and even in the present, cancer services continue to focus predominantly on the acute recovery phase with little emphasis on a five or even ten-year support plan. The first year after treatment is merely the 'tip of the iceberg' and it is crucial that our approach to treating cancer is more visionary and holistic, viewing cancer as a chronic illness rather than an acute condition.

A recent UK survey concluded that at present, follow-up is primarily a check for signs of recurrence or spread (Theis et al., 2010), and checking for recurrence is perceived by the patient as the most important reason for engaging in follow-up. Several studies are currently underway exploring different follow-up methods. What is clear, particularly in the case of colorectal cancer, is that more intense follow-up in the first two years does improve survival, as evidenced by five out of six recent systematic reviews (Figueredo et al., 2003; Richard & Mcleod, 1997; Rosen et al., 1998, Tjandra & Chan, 2007). However, what is not clear is which aspects of follow-up are associated with this. Within the NHS in the UK, consensus meetings have concluded that many follow-up appointments are not required and for many, the common cancers signs of recurrence are as easily and reliably detectable by the patients as they are by expensive surveillance investigations. As long as there is a robust method of feedback to the clinician, i.e. through a specialist nurse, unnecessary appointments can be avoided thus releasing resources and achieving a system, which is more geared to focus on assessment of the cancer, rehabilitation and dealing with the emotional, psychosocial and financial burdens of patients. We need a more bespoke service tailored to the needs of the individual person rather than a 'one size fits all' approach.

The English National Cancer Survivorship Initiative (NCSI) aims to address this issue and provides a vision for better care and support for cancer survivors in the UK. It highlights the importance of recognition and self-management of ongoing problems and raises awareness of the longer-term consequences of cancer (DH, Macmillan Cancer Support & NHS Improvement, 2010). The NCSI is a partnership between Macmillan Cancer Support and the Department of Health and sets out five key shifts in its Vision document of January 2010, outlining ways to assess need, plan care and support cancer survivors to recognise and manage ongoing problems:


related sequelae such as premature ischaemic heart disease and dyslipidemia after radiation to the heart. Ominously, a similar pattern is developing in adults also. Survivors of breast cancer who were given radiotherapy at a relatively young age are now demonstrating an increased incidence of cardiac problems with age. Despite evidence suggesting that these patients are also at a significantly higher risk of recurrence of a second primary later on in life, many are

In the past and even in the present, cancer services continue to focus predominantly on the acute recovery phase with little emphasis on a five or even ten-year support plan. The first year after treatment is merely the 'tip of the iceberg' and it is crucial that our approach to treating cancer is more visionary and holistic, viewing cancer as a chronic illness rather than

A recent UK survey concluded that at present, follow-up is primarily a check for signs of recurrence or spread (Theis et al., 2010), and checking for recurrence is perceived by the patient as the most important reason for engaging in follow-up. Several studies are currently underway exploring different follow-up methods. What is clear, particularly in the case of colorectal cancer, is that more intense follow-up in the first two years does improve survival, as evidenced by five out of six recent systematic reviews (Figueredo et al., 2003; Richard & Mcleod, 1997; Rosen et al., 1998, Tjandra & Chan, 2007). However, what is not clear is which aspects of follow-up are associated with this. Within the NHS in the UK, consensus meetings have concluded that many follow-up appointments are not required and for many, the common cancers signs of recurrence are as easily and reliably detectable by the patients as they are by expensive surveillance investigations. As long as there is a robust method of feedback to the clinician, i.e. through a specialist nurse, unnecessary appointments can be avoided thus releasing resources and achieving a system, which is more geared to focus on assessment of the cancer, rehabilitation and dealing with the emotional, psychosocial and financial burdens of patients. We need a more bespoke service tailored to the needs of the

The English National Cancer Survivorship Initiative (NCSI) aims to address this issue and provides a vision for better care and support for cancer survivors in the UK. It highlights the importance of recognition and self-management of ongoing problems and raises awareness of the longer-term consequences of cancer (DH, Macmillan Cancer Support & NHS Improvement, 2010). The NCSI is a partnership between Macmillan Cancer Support and the Department of Health and sets out five key shifts in its Vision document of January 2010, outlining ways to assess need, plan care and support cancer survivors to recognise and

A cultural shift with greater focus on recovery, health and well-being after cancer

 A shift from a single model of clinical follow-up to tailored support that enables early recognition and preparation for both the signs of further disease and the longer-term

A shift towards using Patient Reported Outcome Measures as well as clinical measures.

A shift towards personalized assessment, information provision and care planning.

not receiving more intense screening than the normal population.

individual person rather than a 'one size fits all' approach.

A shift towards support for self management.

an acute condition.

manage ongoing problems:

consequences of treatment.

treatment.

**4. Responding to the changing cancer story: Focus on the future** 

This should raise awareness and allow intervention to help deal with the longer term consequences of cancer treatment, including the recognition that survivors of cancer have particular risks in relation to unhealthy lifestyles. Some long term cancer survivors express a preference for hospital-based services including telephone based services and those who have experience of such services are generally very positive about them. Furthermore, as part of the National Cancer Survivorship Initiative, different ways to deliver after cancer treatment care such as "end of treatment care packages" including information about "what to expect", written care plans, description of symptoms indicating a need for tests, coping strategies and a variety of educational interventions are being investigated and these will be reported in 2011-12 to aid in the commissioning of new pathways.

If change is to be successfully implemented it will require coordination of services and teamwork between secondary care, primary care and the patients themselves. The transitions between the three phases of survivorship according to Mullan's model have been dubbed as 'teachable moments' (Denmark-Wahnefried et al., 20045). These are seen to be opportunities for giving information on health surveillance and healthy living. Cancer survivors are receptive to any initiatives that will improve their health, but many are not aware that lifestyle changes are especially important for them, given that they are at an increased risk of chronic illnesses and further malignant disease. Not only do we need to equip patients to know what symptoms to look for and when they require to be seen by a medical professional, but we must also unlock these gateways in order that they may benefit from programmes supporting lifestyle change, such as smoking cessation, weight loss and exercise.

Primary care will also need to play an increasingly important role. General practitioner should no longer see cancer in simple terms i.e. 'cured and back to normal' or 'incurable and terminal'. Many general practitioner have not received any training or education about the long-term consequences of cancer and its treatment and therefore may not always make the connection between a symptom or series of symptoms and past cancer treatment. Furthermore, in some cases, they may not view it as their responsibility to identify and manage these consequences. Progressive, complex problems related to rare conditions and/or obsolete treatments may often go unrecognised. Symptoms of all patients with a cancer history should be considered as possibly relating to that cancer. Furthermore, practices must employ up-to-date and accurate recording of patients so that previous cytotoxic or radiation treatments are highlighted on computer systems. Visual alerts can bring an individual's cancer diagnosis to the forefront of the primary care physician's mind during a consultation. The flow of information between oncologist and GP is vital with one of the mandates of the NCSI specifically addressing how this can be improved. GPs also need to be educated on being pro-active in asking about physical symptoms, such as those with heart disease, as well as providing and facilitating psychological support. It is crucial that GPs and patients are given access to freely available information regarding the long term sequelae of oncological treatments, and those patients identified as being at higher risk are more closely monitored and receive appropriate lifestyle advice.

#### **5. Transition**

The landscape of cancer treatment is changing. In today's world we do not just treat cancer – we live with it. In tomorrow's world we will survive it.

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**1. Introduction** 

cancer (Rasmussen, Hansen, & Elverdam 2009).

**Body Image and Cancer** 

Human beings have always been interested in their appearance. Most of us make active efforts to influence the way we look: we exercise, we lose or put on weight, we use make-up and dye our hair, we dress in certain ways, and some of us even have surgery to change parts of the body with which we are dissatisfied. Changes in appearance are sometimes desired, and sometimes not. According to Giddens, the body is easily changeable and reflects our identity (Giddens 1991). Individuals therefore have the ability to change their bodies, if they so wish. The healthy body symbolises a healthy society, while the sick or imperfect body represents a sick society. In advertising, good-looking models are often used, as it is expected that this will cause us to buy the product they are advertising (Rumsey N. & Harcourt D. 2005). Visual appearance is sometimes also linked with inner values. Most societies have their own traditional links; in Western society, for example, red hair is associated with a hot temper, and a link has been found between appearance and the chance of being convicted in court through false consensus (Miyake & Zuckerman 1993). Stereotypical conceptions of links between visual appearance and a person's inner qualities have also been experienced by patients (Rumsey N. 2003). Plough Hansen has, for example, described how women with chemotherapy-induced hair loss experienced this as a loss of womanhood, associated with sickness and death, and therefore used wigs and make-up to control and minimize the effects of the changed appearance (Hansen H.P. 2007). Jutel and Buetow argue that outer appearance and a tendency to focus on first impressions may imply a tendency for health care professionals to use this as an indicator of health, with the risk that this could harm medical practice (Jutel & Buetow 2007). However, although there is an emphasis on visual appearance in our society, such norms as "true beauty comes from within", "do not judge a book by its cover" or "beauty lies in the eye of the beholder" are often more acceptable. People do not generally wish to be regarded as being overly concerned about their appearance, or as someone who judges others on their appearance. This makes it difficult for patients to talk about issues of appearance. It might therefore also seem a contradiction that many smokers continue to smoke rather than risk gaining an extra five kilos, even though the health risk from smoking is many times greater than that of a small amount of extra weight. Similarly, young amateur bodybuilders risk taking anabolic steroids in order to increase their muscle mass, even though this affects their bodies in many ways, and may involve the risk of impotence. In a study of patients attending a cancer rehabilitation centre, it was found that the lack of communication about appearance was experienced as a socially-accepted norm, supported by the taboo on speaking out about

Hanne Konradsen

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