**1. Introduction**

*'An illness in stages, a very long flight of steps that led assuredly to death, but whose every step represented a unique apprenticeship. It was a disease that gave death time to live and its victims time to die, time to discover time, and in the end to discover life.' Hervé Guilbert* 

The incidence of cancer is increasing with most current published statistics suggesting that approximately 300,000 new cases are being diagnosed annually in the UK. 1 in 3 will develop cancer during their lifetime. However, despite the incidence of cancer rising by almost 25% in the last 30 years, mortality rates have fallen by almost 20% in the same time period. In the UK, the overall cancer mortality rate in 2008 stood at just over 150,000 (Cancer Research UK, 2010). At present it is thought that two million people have cancer in the UK and as survival rates continue on an upward trend, this figure will only continue to rise (Table 1, Figures 1 and 2). This means that more and more people are living with or beyond a diagnosis of cancer especially with improving cure rates. Cancer is no longer a death sentence for an increasing number of patients.


*Kings College London, MacMillan Cancer Support and National Cancer Intelligence Network,Cancer Prevalence in the UK, 2008* 

Table 1. Number of people living in the UK and England who have had a cancer diagnosis

Living With and Beyond Cancer: New Challenges 3

(1) 1971-1991 Cohort Analysis – actual survival, (2) 2007 Hybrid Analysis – predicted survival

Fig. 2. Ten year relative survival (%), adults (15-99 years), selected cancers, England and

In fact, survival is increasing and we extrapolate that by 2030 the number of cancer survivors will rise to 4 million (Armes et al., 2009). For the most part, these individuals remain well and healthy but a small number will experience changes to their well-being. As more people live with cancer the proportion of this latter group will go up as well. Crosssectional studies of populations with chronic illnesses reveal similar health and wellness profiles to populations in whom cancer is present but not active (Birgisson et al., 2008) This suggests that we are living long enough to develop conditions related to the treatment as well as the cancer itself and that we must focus on the quality of survival after different

1Coleman MP et al. Research commissioned by Cancer Research UK, 2010

Wales: survival trends for selected cancers 1971-2007

treatments.

Relative five-year estimates based on survival probabilities observed during 2000-2001, by sex and site, England and Wales

1Cancer Research UK, Cancer Stats

2Coleman MP et al. Trends and socioeconomic inequalities in cancer survival in England and Wales up to 2001.Br J Cancer, 2004. 90(7): 1367-73

Fig. 1. Relative 5-year survival rates1,2

Relative five-year estimates based on survival probabilities observed during 2000-2001, by

2Coleman MP et al. Trends and socioeconomic inequalities in cancer survival in England and Wales up

sex and site, England and Wales

1Cancer Research UK, Cancer Stats

to 2001.Br J Cancer, 2004. 90(7): 1367-73 Fig. 1. Relative 5-year survival rates1,2

(1) 1971-1991 Cohort Analysis – actual survival, (2) 2007 Hybrid Analysis – predicted survival 1Coleman MP et al. Research commissioned by Cancer Research UK, 2010

Fig. 2. Ten year relative survival (%), adults (15-99 years), selected cancers, England and Wales: survival trends for selected cancers 1971-2007

In fact, survival is increasing and we extrapolate that by 2030 the number of cancer survivors will rise to 4 million (Armes et al., 2009). For the most part, these individuals remain well and healthy but a small number will experience changes to their well-being. As more people live with cancer the proportion of this latter group will go up as well. Crosssectional studies of populations with chronic illnesses reveal similar health and wellness profiles to populations in whom cancer is present but not active (Birgisson et al., 2008) This suggests that we are living long enough to develop conditions related to the treatment as well as the cancer itself and that we must focus on the quality of survival after different treatments.

Living With and Beyond Cancer: New Challenges 5

Surgery, chemotherapy and radiotherapy all have consequences, which may become apparent immediately or after several years. These include urinary, bowel and sexual dysfunction, neuropathy, cardiovascular and endocrine abnormalities. Those treated as children are at greater risk of complex and inter-related issues arising after a substantial period of time with the risk of a second malignancy becoming an increasingly real threat. Surgery and radiotherapy can result in significant ongoing co-morbidities. For those patients, for example, who underwent bowel resections, gastrointestinal sequelae of treatment can be severe and most often manifest as loose stool and incontinence. Pelvic radiotherapy has led to increasing cure rates of many cancers but the incidence of long term gastrointestinal problems is even higher (Flentje & Guckenberger, 2006) than with surgery including problems such as urgency, flatulence, abdominal pain and intermittent or regular soiling. Studies report that only a third of patients report normal or good bowel function (Lundby et al., 2005; Marijnen et al., 2005). Despite this, only few gastroenterologists feel

Management of long-term gastrointestinal effects is poorly represented in the literature with little research in the field. Such problems are often very embarrassing to patients and therefore under-reported. Patients may feel that nothing can be done and physicians may not encourage patients to discuss these issues due to their minimal experience in dealing with them (Andreyev et al., 2003a, Andreyev et al., 2003b; Putta & Andreyev, 2005). Such patients inevitably withdraw from social interaction from fear of uncontrollable symptoms (Faithfull, 1995). It is not just bowel related difficulties that these patients face but also urological and sexual dysfunction. Furthermore, fractures, neurological issues and thromboembolic phenomena are also seen, although less frequently. 17,000 patients a year are treated with radiotherapy to the pelvis with almost 80,000 survivors of this treatment in the UK. Almost half of these individuals feel that sequelae of treatment has had an impact on their quality of life with 27,000 describing this impact as moderate to severe. These figures are probably an underestimation, particularly as follow-up times for most studies preclude the true magnitude of late effects. Furthermore, few patients freely admit to diarrhoea or incontinence unless directly asked and therefore questionnaires may be too insensitive and not reproducible. The British Society of Gastroenterology is due to publish guidelines on the

The formation of RAGE (Radiotherapy Action Group Exposure) campaign was to address and improve conditions for patients with breast cancer who experienced late radiation injury as a consequence of radiotherapy at a time when there were no national standards in the United Kingdom. Although radiation damage is relatively rare, serious injuries such as those to the brachial plexus nerves causing weakness of the ipsilateral shoulder, arm and hand and vascular compromise have been reported. Less serious consequences such as rib fractures and skin discoloration may also arise. However, with many women now alive more than a decade after their diagnosis, the consequences of treatment of radiotherapy are becoming an increasing reality and a burden. Macmillan Cancer Support UK have focused

 Second cancers (e.g. breast cancer following radiotherapy for Hodgkin's disease) Emotional impact of long-term and late effects of cancer and its treatment.

Genitourinary system (e.g. following pelvic radiotherapy)

adequately trained to deal with such side effects of treatment.

management of treatment-related late effects this year.

on six main areas in response to RAGE (Hanley & Staley, 2006).

**2.2 Treatment related late effects** 

A quarter of cancer patients will experience long-term effects that compromise their quality of life. These effects may manifest up to 10 years later and range from minor ailments in the majority to complex and debilitating problems for an unlucky few. Treatments now used to cure patients may no longer be considered ideal when treatment related adverse effects are taken into account and although most will be able to cope with minor conditions, a substantial minority will not. As a result, we must recognise and address the needs of these individuals. Early detection of symptoms, appropriate management and patient education are all key aspects to this. As curative approaches to different cancers become increasingly widespread, the focus needs to be more on quality of survival and reducing the disability associated with them. This is our challenge for the future.

At present it is estimated that almost half a million cancer survivors in the UK suffer from a chronic treatment related condition which impacts their quality of life. In the United States, a National Health Interview study (Hewitt et al., 2003) compared 5,000 cancer survivors with 90,000 people without any history of cancer. It found that cancer survivors were more likely to report being in poor health both psychologically and physically. As we move forward, this will translate into a huge burden on our health resources, especially in the primary care setting. These findings are mirrored by results of similar studies in the UK which have also highlighted the financial impact on cancer patients as a result of no longer being able to work or who are subject to extra costs incurred due to their treatment and/or long-term disability (Fobair, 2007; Macmillan Cancer Support, 2006; Yabroff et al., 2007). It is important therefore, that measures are put in place now to minimise this.
