New Voices: Breast cancer - a voyage into hearts and minds

a voyage of discovery with survivors of breast cancer with Caroline Muttitt in the latest of our series for budding writers

My personal interest in psychology was initiated by numerous intense and challenging experiences, the most poignant of which was an extensive family history of breast cancer.?This hit home during my twenties when three of my maternal aunts were diagnosed, followed by my cousin Claire. By the time I reached my thirties it became necessary to look this ‘monster’ in the eye.
I wanted to know whether breast cancer was genetic within our family, and a long and enthralling personal journey ensued. I found myself with clinicians investigating my ‘cancer family tree’; and volunteered with Breast Cancer Care, which led to friendships with dozens of breast cancer survivors. I became hungry to develop my understanding of how living as a cancer ‘survivor’ can spark many diverse emotions including frustration and empowerment, as well as the paradox of feeling both overwhelming loss and extreme gratitude. I was curious as to whether returning to work facilitates or debilitates long-term recovery, and whether educating employers and fellow colleagues can help to ensure that this important milestone is a positive and enriching experience rather than a fraught and distressing one. For my undergraduate dissertation, I had the immense privilege of interviewing two men and six women who had been breast cancer ‘victims’ and were now in recovery. The continuous struggle to manage their cancer experience overlapped into all domains: emotional, physical, practical (e.g. financial) and interpersonal. Being privy to such intimate, touching and overwhelmingly emotional stories was an honour. This project became more than a fact-finding mission, it was a voyage into the hearts and minds of real people.
Whilst incidents of breast cancer have risen by 50 per cent in the past 25 years and are consistently increasing, survival rates are progressively positive, with mortality rates having fallen by a third since the 1980s (Cancer Research UK, 2009). Almost 50 per cent of adult survivors are below age 65, and the majority of these will return to work following treatment (IPOS 10th World Congress, 2008). Breast cancer is a complex disease and follows an unpredictable path, each person’s physical and emotional experience being unique, the impact of returning to the workplace differing enormously from person to person (Breast Cancer Care, 2008). This return is important, given that numerous studies suggest that work has special meaning for those with cancer: it is synonymous with feelings of hope, interdependence, enhanced pride and self-esteem (Ferrell et al., 1997; Peteet, 2000; Rasmussen & Elverdam, 2008). Unfortunately, medical advice in relation to making a smooth transition to work and coping adequately on the return is both ambiguous and limited (Amir et al., 2008; Main et al., 2005).
For the men and women I spoke to, reasons for wanting to go back included a need to focus away from their cancer, regaining a sense of normality and recovery; confirming previous findings (Amir et al., 2008; Kennedy et al., 2007; Peteet, 2000). Three of those I questioned wanted to return more quickly than encouraged.
While the majority enjoyed a positive relationship with their colleagues, six of the eight participants described their work demands pre-diagnosis as highly stressful. Difficulties following return were predominately due to changes of job role, staff, clientele, or alterations to the regime implemented made whilst they were away. But how is this experience different for a cancer survivor than for someone returning after maternity leave, or a year exploring a foreign country? Further research should examine in what unique ways such natural alterations affect cancer survivors on their return, as these shifting patterns may strongly impact (both mentally and physically) upon an individual’s ability to recover.
Many of the survivors voiced their appreciation for the support they received from work colleagues, which was on the whole beneficial. The cancer information service Cancerbackup has advised that when cancer survivors are offered high-quality emotional and practical support at work, they are more effective at managing health issues. Those who do not receive advice concerning the management of tasks are four times more likely to feel their work life has declined.
Five of my interviewees were offered either a phased return to work, or a degree of initial flexibility in relation to their working hours. On the negative side, some described a lack of constructive assistance and received no emotional outlet, despite being in careers that involved providing support to others. Since these incidents occurred, the Disability Discrimination Act has been updated specifically to include cancer survivors; it may be prudent for a study to assess whether this alteration has significantly impacted the workplace. Do cancer survivors feel able to communicate their needs effectively? Do they themselves understand these needs and how they might change over time? Are feelings of vulnerability or a lack of self-confidence barriers to asking for support in an effective way?
The overwhelming side-effect described by participants was fatigue, whether as a result of surgery, chemotherapy or hormone treatment, which supports previous findings (e.g. Hansen et al., 2008; Kim et al., 2008). Fatigue can severely impact work performance, and may continue for years following treatment (Kennedy et al., 2007). Workers often require more flexibility in the nature of their tasks in order to cope. For example, a deputy headteacher reduced her hours, took regular breaks and worked more efficiently in order to manage her feelings of fatigue.
Those I spoke to did not confirm previous findings that younger breast cancer survivors suffer more intensely than older candidates (Kim et al., 2008), or that the aggressiveness of treatment is a predictive factor (Bower et al., 2006). Clear differences were observed in coping ability between survivors who undertook multiple roles, and those who had adult children and reduced responsibilities.
A lengthy absence and therefore the ability to fully recover, along with the ability to work part-time or phase their return, was associated with a marked reduction in these symptoms.
My interviewees talked of experiencing a range of anxiety-provoking thoughts concerning their well-being. There is, however, no indication that the participants in this study who reduced their working hours, or changed their employment situation, did so because of depressive or anxious symptoms. The overwhelming issue regarding appearance was hair loss. Two participants communicated this as the most distressing experience in relation to having breast cancer, which adds credit to previous evidence (Kennedy et al., 2007; Munstedt et al., 1997). Financial pressures are common amongst cancer sufferers, with many patients reporting having to return to work despite being physically or emotionally inadequate (Amir et al., 2008; Breast Cancer Care, 2008; Kennedy et al., 2007).
Most of the men and women I spoke to harboured worries over the possibility that their cancer would recur in the future, often linked to symptoms of minor illness (supporting Brain et al., 2006; Lethborg et al., 2000). Concerns seemed to abate gradually over time. Work may assist in making cancer feel like a more distant experience. This may be true following any traumatic event, however the reality that cancer may again rear its head is always lurking somewhere in the shadows, no matter how distant the initial diagnosis or how successful the treatment. All of the participants I spoke to indicated having a greater sense of mortality, and that their priorities had altered as a result.
Overall, findings demonstrate that the ability to manage one’s difficulties is to some extent determined by a survivor’s perception of control over their situation (Bárez et al., 2008; Hirai et al., 2002).
A ‘one size fits all’ approach may prove ineffective, due to the uniqueness of the breast cancer experience. Interventions may instead concentrate upon promoting high-quality communication between cancer patients, medical professionals and employers and ensuring that survivors can exercise appropriately guided choice and control over their treatment and working lives. Survivors themselves may need to be encouraged to voice their concerns and needs against a backdrop that is open and accepting. They may need permission to take backward steps as well as forward ones, due to the emotional and physical unpredictability of the cancer journey.
Research should continue to emphasise the need for individuals to bridge the ‘intention­–behaviour gap’ in relation to behaviours such as self-examination, mammography uptake and seeking health advice (Danish et al., 2008; Harmon et al., 2005); especially amongst ethnic minority and disadvantaged communities. Increasing knowledge (and therefore self-esteem) may enable men and women to become more confident in observing and reporting changes within their own bodies; but will this translate into being confident to voice their own support and medical needs should cancer be found?  
Harmon et al. (2005) found that teaching students about their genealogical history, and therefore their susceptibility to disease, significantly increased their intention to perform self-examination.
It would be interesting to determine the attitudes of those who discover they are at a ‘low’ risk, as one in every eight women in the UK general population will receive a diagnosis of breast cancer sometime in their lives. As for me, I was amazed to discover that our family history is not driven by a breast cancer gene; although my ‘familial’ make-up does not rule out the possibility that I am at a higher risk than average. At least I feel prepared to cope more adequately should I encounter such a diagnosis. Our inheritance often takes us on a voyage of discovery, and I have found facing up to the ‘monster’ enlightening and rewarding.

Caroline Muttitt is a psychological research master’s student at Sheffield Hallam University. [email protected]

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