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an individual, their family and implications for nursing practice. Life has changed and will never be the same again! A diagnosis of breast cancer immediately instils fear in all who are affected. This is a potentially life limiting diagnosis. Although treatments are available, there are no guarantees in place. This means that after enduring disfiguring surgery, invasive therapies such as chemotherapy and radiotherapy and their associated side effects they still may not survive. The concept of survivorship is a complex multifaceted one which encompasses the patient, their family and social support structures. It has no boundaries and has biological, psychological, socio-cultural, environmental and politico-economic implications for all parties (Roper et al 2000). A review of the current literature has identified several key areas and these have been expanded upon in text. These include relationships, quality of life, coping strategies, genetics, transitions in care and information. The key theme that has developed is the concept of survivorship and how it is interpreted by those who have cancer as opposed to general society. There are indications that the whole area of cancer care needs to be re-evaluated and adapted to the needs of the individual. Not to the needs that society expects these individuals should have. Several implications for nursing practice have also been outlined. Where this journey begins is easily pinpointed however, this journey is unending
Survivorship! The buzz word associated with life after cancer. It conjures up images of wars won and enemies defeated yet this one word does not even begin to describe the highs, lows and challenges that face a woman with breast cancer. Life is forever changed. This is not a new concept; Tighe et al (2011), McCann et al (2010) and Rasmussen et al (2010) suggest that survivorship is a dynamic and lifelong process which is similar to Kaiser (2008) suggestions that a breast cancer patient is a survivor from the day she is diagnosed. However, an interesting anomaly has also been identified by Kaiser (2008). Evidence suggests that breast cancer patients rarely use the term to describe themselves; they use it to describe others. Several papers have explored these aspects and several possibilities have been explored. There are suggestions that these individuals refuse to adopt this terminology as they feel they are fighting an ongoing battle with cancer and they acknowledge the constant threat of recurrence (Kaiser 2008). Others report that they did not think that they were sick enough and did not want to accept the sick role that society expects. This sick role, which society as forced on these individuals as society as a whole are afraid to be reminded of their own mortality (Sadler et al 2010). The women involved in Sadler et al (2010) qualitative study identified that they did not want to fall into this role, mainly as it was further evidence of their loss of control as did Costelloe and Nelson (2004), Hinnen et al (2009), Stang and Mittlemark (2010). Perrault and Bourbonnais (2005) indicates that the cancer journey begins at diagnosis however, it could be suggested this journey begins at the routine screening processes or when a breast abnormality is detected during self examination. This journey also begins at a different stage for those affected by familial breast cancer. Bruno et al (2010) identify that these women often undergo genetic screening in order to gain control over their perceived risk of cancer and also identify their children’s risk. However, Perreault and Bourbonnais
(2005) question the current emphasis on genetic and familial screening for hereditary breast cancer and the vindicate this position by indicating that these processes lead to unnecessary physical and psychological trauma as well as over monopolising the limited diagnostic procedures (Shiloh et al 2009). Another aspect to be considered is what action should be taken if these individuals are identified as carriers of breast cancer genes. Prophylactic bilateral mastectomy is one of the options to prevent the development of cancer yet Lostumbo et al (2010) clearly identify that there is no available evidence to support this radical treatment. Sivell et al (2008) reviewed three trials relating to genetic breast cancer screening and all three support the need for proper risk assessment and genetic counselling in order to reduce distress and prevent unnecessary screenings. Each woman living with breast cancer undergoes a unique, individualised journey which is often based on their perception and understanding of the disease. It is vital to remember that these women do not undertake the journey alone. They bring with them spouses, children, family and friends who are all affected by this disease and its treatments (Langtry et al 2009). In the initial phase they and their family may be inundated with information and faced with making life altering decisions in a very short time frame and the transition from health to illness is almost instantaneous (Boehmke and Dickerson 2006). These increased levels of stress have huge implications for long term health as Von Ah et al 2007) suggest that it may lead to a poorer immune response. Financial difficulties may also be encountered, whether as a result of long term sick leave or increasing health care costs (McCann et al 2010). Camp-Sorrell (2009); Coyne and Borbasi (2006) explains that improved screening and treatments for breast cancer have led to an increased number of survivors living with breast cancer. Young women, classified as those less than fifty years old face specific problems related to fertility and childbearing(Thewes and Wilde 2005). Treatment aimed at slowing or curing breast cancer comes with huge, life altering side effects. Knobf (2008) identifies one
of the most devastating side effects of these treatments are chemotherapy induced menopause although research by Schultz et al (2005) indicates that the menopausal symptoms experienced by breast cancer patients are no more intense than those experienced by individual’s naturally experiencing menopause. Manning-Walsh (2005) had similar findings that there was no relationship between age and levels of reported symptom distress. This seems to contradict specific research by Coyne and Borbasi (2006) which identified that younger women do experience greater distress and anxiety at diagnosis. They also identified that the biggest factors contributing to their psychological distress were clinically induced menopause and Sadler et al (2010) finding that a substantial worry for a young woman diagnosed with breast cancer is the possibility that they may not live to see their children grow up. The breast cancer patient will spend a larger portion of her life in a menopausal state which is bound to have ramifications for her quality of life. Treatment may be completed and the battle with cancer won, but there is still the undeniable worry of recurrence, regardless of age. Boehmke and Dickerson (2006) suggest that some women may become hyper vigilant for signs and symptoms of illness. The patient experiences upheaval all over again as treatment is completed and life is altered again. Routines and roles which were altered because of their illness must be re-adjusted and patients report a sense of loss and insecurity as their care is transferred from a hospital based management team to a primary care team (Miller 2008). The changes a patient with breast cancer undergoes may not be blatantly obvious to everyone, yet on closer examination a clear division is obvious between life before and after (Sadler et al 2010). Patients often have no obvious physical signs and symptoms prior to diagnosis. The physical changes ultimately occur as a result of treatments whether surgical interventions or medical therapies such as radiotherapy, chemotherapy or hormonal treatments. As an example, a study by Bitsuka et al (2010) found that hair loss had a more
distressing impact than the loss of breast tissue. It is obvious that cumulative effect that these interventions have a detrimental effect on both the physical and emotional health of these women (Mitchell 2009). All of these women undergo a variety of treatments in an attempt to cure or manage this disease and with these treatments come a barrage of life altering side effects. Tighe et al (2011) identified hair loss, fatigue and physical disfigurement as those which have the most devastating effects on their interpersonal relationships. Women report that their identities are constantly changing after a diagnosis of breast cancer and these physical changes often lead to dramatic changes to everyday life. This results in huge negative impacts on emotional wellbeing, for example changes in recreational activities or routines (Bitsuka et al 2010). These outwardly obvious changes have huge implications in each and every social interaction the woman finds herself in (Rasmussen et al 2010). Patients report being stared at or avoided by those they knew. The majority of patients identified an actual specific statement which caused them the most distress, “how well you look” (Rasmussen et al 2010, p156). As a result of these interactions these women report felling as if they have to hide their altered physique which has a devastating impact upon their mental and physical health. They report a decreased quality of life and often become socially isolated (Bitsuka et al 2010). Another huge hurdle these women may face is reconstructive surgery. These women have lost a part of their body and enter into a state of mourning. This reconstructive surgery allows the woman to regain a sense of femininity as well as returning their body to a socially acceptable physical image (Fallbjork et al 2011).This surgery is another assault on the body and comes with another set of possible problems for the woman to encounter. Treatment may be completed and the battle with cancer won, but there is still the undeniable worry of recurrence, regardless of age. Boehmke and Dickerson (2006) suggest that some
women may become hyper vigilant for signs and symptoms of illness. The patient experiences upheaval all over again as treatment is completed and life is altered again. Routines and roles which were altered because of their illness must be re-adjusted and patients report a sense of loss and insecurity as their care is transferred from a hospital based management team to a primary care team (Miller 2008). Women’s experience of breast cancer is largely influenced by social, racial, cultural, religious factors alongside their age at diagnosis and family dynamics (Taleghani et al 2006). A study of women with breast cancer by Perrault and Bourbonnais (2005) identified that women experience suffering related to physical, emotional, psychological, spiritual and social aspects of living with this disease. This was reinforced by Ying Chen and Hui-Chen (2011) whose qualitative study identified a huge variation of negative feelings and emotions experienced from diagnosis to treatment and life thereafter. Some positive themes were also identified namely the re-evaluation of the meaning of life, lifestyle adjustments and strengthened family ties. These women go through multiple cycles of crisis, recovery and change in all aspects of their lives, domestically, socially and in their work environments as a direct result of cancer (Tighe et al 2011). Gilbar and Hevroni (2007) describe how women attempt to cope with their diagnosis by using counterfactuals, or in layman’s terms wishful thinking. This process may both positive and negative outcomes. These thoughts may form a distraction or lead to changes in health related behaviour such as smoking cessation (Maher and Fenlon 2010) but Gilbar and Hevroni (2007) found that increased counterfactual thoughts leads greater levels of distress. Coping strategies adopted by women with breast cancer include social support, spirituality, wishful thinking and making changes. Danhauer et al (2009) suggest that these coping strategies are used less and less as time goes on as these patients feel detached from their illness over an extended period of time, making changes in response to their quality of life.
Spirituality has been identified as a common coping mechanism and source of support among breast cancer patients. Some studies have reported increased faith (Sadler et al 2010) and comfort in God whereas others find they are angry and often blame God for their predicament (Demir et al 2008). These women often report some existential changes and begin to look for meaning and purpose in their life. Solace can often be found when these patients accept their illness and prognosis (Boehmke and Dickerson 2006), even though they may be faced with death. They often find this in giving back to others in society via voluntary support groups associated with breast cancer. Hinnen et al (2009) recognises that social support is priceless and that it plays a vital role in allowing the patient to adapt and cope with their illness, but, consideration for these social supports, be they family, friend or spouse will also experience distress which cannot be ignored. Vitally, they may also be under increased physical demand in their capacity as caregiver. Coyne and Borbasi (2006) discuss the some of the issues faced by the family faced with a diagnosis of breast cancer. They have identified that in the majority, woman often put on a brave front in order to protect their partner and families (Rosedale 2009); this however is both physically and emotionally exhaustive. Mitchell (2007) suggests that women also use their family as a distraction but also as their main source of support. However, Coyne and Borbasi (2006) report that women felt they received inadequate care and support from their family units. Research by Hinnen et al (2009), Coyne et al (2011) suggests that the partner/spouse wish to protect their partner can be detrimental to the woman’s psychological health as it is a further demonstration of their loss of control. Undoubtedly these people are hugely devastated by their loved ones illness and Zahlis and Lewis (2010) identified they too face problems. These problems included being unable to accept the diagnosis and relationship problems. The majority reported that the physical side of their relationships were negatively affected. Huber
et al (2006) do however identify that male partners are more worried about the potential mortality of their partner rather than the physical disfigurement related to breast cancer. A study into the experiences of adolescents whose mothers have breast cancer (Clemmens 2009) identified that role changes had a huge impact on these children. Conflict arises in all aspects of their relationship. These adolescents want to live their own lives but the feel that they owe it to their mother to support her (Mitchell 2007). These young people appear to engage on a journey of self discovery and they learn too who their mother really is. Implications for nursing are wide and varied in relation to the patient with breast cancer(Otto 2001). Within Ireland Whitaker (2010) indicates that in order to provide effective cancer support services the patient must always come first, services must be structured and accessible locally and the staff must be adequately qualified. Therefore Nurses have a pivotal role to play in enabling their patients to make sense of their situation while allowing them to identify coping mechanisms rather than identifying these mechanisms for them (Ying-Chen and Hui-Chen 2011). Patients may also require assistance in breaking the news of their diagnosis to their family (Banning 2007). Cruickshank et al (2008) reviewed the role of specialist breast care nurses and identified that psychosocial interventions by nurse’s result in short term lower levels of anxiety in relation to diagnosis and treatment. However they have also identified evidence to support the basis that these nursing interventions have no long term impact on coping skills or quality of life. However Jones et al (2010) indicates that breast care nurses play a key part in the continuity of care and are invaluable as they provide support and information to the patient, her family and to other healthcare professionals. Mitchell (2007), Coyne et al (2011) indicates that it is vital that healthcare providers understand the underlying family dynamic in order to provide the best care. Rabin et al
(2009) supports this also and indicates that the families’ interpretation and assessment of the patients’ symptoms and coping mechanisms are vital to provide holistic care. Nurses too must stand back and allow these women to make peace with their diagnosis and allow them the time and space to do so. Some will find strength through spirituality whilst others may wish to talk about their experience (Manning-Walsh 2005). Nurses have been identified as invaluable support to women and their families at this time (National Health and Medical Research Council 2003) and have a duty to ensure their patients receive enough time and information to allow them to make informed decisions or take on new perspectives (Van Vliet et al 2011). The need for nurses to demonstrate interviewing and counselling skills cannot be underestimated. Although the woman is the patient and the centre of attention the vital role that her family plays in her illness or recovery must not be ignored (Clemmens 2009) (Banning 2007) and nurses have a huge part to play in facilitating communication (Leung and Esplen 2010) (Witt-Sherman et al 2009) (Schmid-Buchi et al 2008). Worryingly Remmers et al (2010) indicate that up to 50% of nurses demonstrate blocking behaviour as did (CampSorrell 2009), Huber et al 2006) in relation to reproductive health. Obviously lack of information and or lack of confidence to address these issues form a huge barrier to the delivery of holistic care for these women. Tighe et al (2011) also identifies that women with breast cancer feel that there is not enough support available to them and their families on a long term basis. Areas of particular concern identified by this study were fatigue management, hair loss and relationship counselling for them and their partners. Palliative care which would provide vital support systems are largely underutilised by these individuals as it is associated with terminal illness and death (Leung and Esplen 2010). Maher and Fenlon (2010) identify a potential cause of this as the lack of
discussion on this topic until too late. This may be due to the neglect of the topic on purpose or as a result of an inaccurate prognosis. The lived experience of the breast cancer journey has been described by Coyne and Walsh (2006) and Brooks (2006, p 31) as a “rollercoaster journey, once you get on, there’s no getting off”. This statement aptly describes the highs and lows of the cancer journey whilst letting us know that there is no certainty, no guarantees and perhaps the most devastating aspect of all, no control! Breast Cancer is a disease which has received much attention and publicity in an attempt to increase awareness, raise funds for research and deliver support to these women affected by the disease. Kaiser (2008) indicate that although cancer survivors acknowledge the positive aspects of these endeavours, women report that the inaccurate positive spin put on surviving this disease are very unrealistic and as such many women feel unprepared to cope with the future. Two further areas of concern were identified in the research, firstly, Royak-Schaler et al (2009) identified that those in the high risk groups were receiving inadequate guidance and support. The second aspect was identified by Grandjean (2011) and was related to follow up screening post treatment. They identified that compliance with repeat mammograms were less than the expected standard. A contributing factor to this may be the increased incidence of depression in breast cancer patients. Colleoni et al (2000) suggests that depression is often neglected as the focus is on treating the cancer. Finally, Stang and Mittlemark (2010) identify an imbalance in the nurse patient relationship which is relevant to all interactions in healthcare. It is vital that healthcare professionals remember that they are the experts and the patient the novice, immediately presenting these people with another power issue. We must empower these patients to become experts in
relation to their own health. Another indication for healthcare professionals lies in acknowledging that problems we may consider minor may be the most bothersome and distressing to a woman with breast cancer (Boehmke et al 2006), although this is true for most illnesses. A further aspect identified in the research which requires notice is that breast cancer and menopause are two entirely separate issues which require independent assessment and treatment
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