**3. Surviving cancer**

6 Topics in Cancer Survivorship

3. Increasing the support to patients by providing information and assistance to patients in understanding the potential changes in their own health after treatment and on when

4. The development of easily accessible pathways to access multidisciplinary specialist

5. The development of an expert patient program for chronic treatment related conditions. 6. The development of innovative commissioning models to help patients get the care they

It is not just surgery and radiotherapy that have consequences. Chemotherapy is toxic and mutagenic, causing short-term multi-organ toxicity and increasing the risk of secondary malignancy. Two of the biggest hurdles women with breast cancer face after treatment is the fatigue associated with the cumulative effect of months of treatment and the after-effects of chemotherapy, together with mild cognitive impairment such as memory deficits, often termed "chemobrain" (Tannock et al., 2004). Furthermore, ongoing treatments in patients with breast cancer such as endocrine therapies which are often continued for at least five years, can affect recovery, leaving patients with physical problems such as fatigue, hot flushes, weight gain, joint pains and muscle aches. Tamoxifen can cause endometrial hyperplasia and increase the risk of endometrial malignancy. Osteoporosis and arthalgia are potential adverse effects that can arise from the use of aromatase inhibitors. Although hospital based follow-up systems have been developed to help monitor and detect any late toxicities, it may actually be more effective to educate patients to recognize problems. It is also important that adaptive strategies are discussed with patients in order to help them

A small proportion will suffer from severe or complex problems associated with treatment requiring specialist input. Some of these could be avoided through the prompt recognition and correct management of symptoms thereby avoiding the potential distressing complications resulting from inappropriate procedures. Occasionally, there may be people with unexpected effects associated with treatments which may require a national process of recall, reassessment and commissioning of new services. An example of this is in the group of young patients who received "Mantle" field radiotherapy for Hodgkin's lymphoma which was subsequently associated with a high incidence of breast cancer. There are challenges both in identifying which patients should be recalled as well as how to link them

Secondary malignancies can develop as a consequence of primary treatment, in particular, for patients who received treatment for a childhood cancer. Treatment for Hodgkin's lymphoma is associated with secondary leukaemia and breast cancer. Secondary malignancies are the sixth most common cancer in the USA (after skin, breast, prostate, bowel and lung cancers) and a cancer survivor has twice the risk of a comparable individual without cancer of developing another primary. This makes it all the more important to

educate patients and GPs about potential warning signs of another malignancy.

1. The development of a national register of consequences of treatment. 2. The improvement of communication between primary and secondary care.

expertise to patients with late side-effects.

to seek help.

cope with these side-effects.

**2.4 Secondary malignancies** 

**2.3 Complex treatment related late effects** 

to appropriate specialist multidisciplinary management.

need.

Mullan (1985) in his seminal paper "Seasons of Survival" describes the evolving process of surviving cancer as beginning from diagnosis and involving the following 3 phases (Mullan, 1985):


The **acute phase** is particularly difficult with a multitude of physical and psychosocial issues that patients may face. The organic side effects of treatment are the first hurdle but with the completion of treatment, a whole host of unexpected emotions such as uncertainty, fear of recurrence and abandonment may surface (Pelusi, 1997). There are huge psychological hurdles that patients may need to deal with; a sustained mortal threat, unrelenting personal and domestic turmoil, long difficult medical treatments and a prolonged uncertainty about the future. At this point, patients may find that they need to face up to the realities from being an ill person to being a survivor, from feeling time is unlimited to a having finite lifespan and from being fully able to living with a disfigurement or disability. Returning to work can be a huge physical and mental challenge. Patients' view of themselves may have changed and side effects of treatment such as mood changes and hot flushes may make social interaction difficult (Charmaz, 1983; Wyatt 1996). Hospitals form a protective bubble, having become a familiar and comfortable place in which patients often feel a sense of togetherness and reassurance. The sudden foray into the world outside can therefore be lonely and unpredictable. As time passes, most begin to feel a sense of security return and find that their health becomes more predictable. However a significant proportion, approximately 20-30%, will still suffer from continuing distress (Absolom, 2009; Foster, 2009) and will require increasing support in the community. Predictors of persistent, moderate and severe problems with daily living may include a high level of unmet physical needs, fear of recurrence, stress of looking after a family and increasing imposition on their health by unrelated co-morbidities or iatrogenic interventions.

**Extended survival** is the period where active hospital based surveillance is the mainstay of follow-up. However, these first five years after treatment has ended also represent the period of highest recurrence risk. Reduced levels of activity and less acute symptomatology may persist which over time could erode into the ability to enjoy life and maintain relationships. For example, menopausal symptoms are experienced by 70% of patients treated for breast cancer and can persist for several years impacting severely on quality of life (Carpenter & Andrykowski, 1999; Fenlon et al., 2009; Hunter et al., 2004; Walker et al., 2007). An online survey found that over 30% of breast cancer survivors stopped adjuvant aromatase inhibitor therapy due to their side effects (Zivian & Salgado, 2007). Long term sexual difficulties are also a challenge, with loss of libido, decreased orgasm and physical difficulties (retrograde ejaculation and impotence in men on GHRH antagonists, dyspareunia in women on endocrine therapy). Such issues are often considered taboo or difficult to discuss with medical professionals. Many more women are being diagnosed at a younger age due to screening programmes and therefore wish to maintain fertility. Access to fertility preserving facilities is variable and simply potentiates an already sensitive issue (Amir & Ramati, 2002; Bloom et al., 2004; Broeckel et al., 2002).

**Permanent survival** refers to treatment related problems that emerge years or decades after the initial diagnosis. This is most apparent in children, a group in whom, as cancer treatment has become more successful, has an increasing number of survivors developing treatment

Living With and Beyond Cancer: New Challenges 9

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

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

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

The landscape of cancer treatment is changing. In today's world we do not just treat cancer –

reported in 2011-12 to aid in the commissioning of new pathways.

are more closely monitored and receive appropriate lifestyle advice.

we live with it. In tomorrow's world we will survive it.

exercise.

**5. Transition** 

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 not receiving more intense screening than the normal population.
