Insights from the frontlines of breast cancer care

In my role as practice manager of a general surgeon’s practice, I often witness the arduous and complicated journey patients face when confronted with health challenges. They struggle to absorb the consequences of a life-threatening disease and to contemplate its full impact on their lives. One particular journey has struck me — breast cancer.

Receiving a breast cancer diagnosis fills patients with complex and conflicting emotions; fear, hope, and determination alternate and collide throughout their treatment and beyond, all while they have to make immediate decisions about treatment, the financial impact, co-ordination of appointments, and striking a balance between maintaining their career and taking time off to recover and heal. Breast cancer impacts every aspect of their lives, including their ability to navigate the workplace with confidence.⁽¹⁾ These women need comprehensive support systems, in both the clinical and work environments, in facing this life-changing challenge.

This article draws insights from academic peer-reviewed articles, delving into the intricacies of breast cancer care within the South African workplace. Through an evaluation of evidenced-based strategies, first-hand experience, and expert perspectives, this article aims to simplify the path for employers towards creating more compassionate, inclusive, and supportive workplace environments for employees battling breast cancer.

Epidemiology of breast cancer

According to recent epidemiological studies, breast cancer ranks as the most common cancer, and is the leading cause of death due to cancer amongst women worldwide,⁽²⁾⁽³⁾ with women having an estimated one-in-eight chance of developing invasive breast cancer in their lifetime.⁽⁴⁾ Breast cancer in men is rare, with less than 1% of all breast cancers occurring in men, but it is usually more advanced by the time it is diagnosed. Currently, breast cancer is most often diagnosed in older women, with more than 80% of patients over the age of 50 years, but the incidence amongst younger women is rising.⁽⁵⁾⁽⁶⁾ In South Africa, breast cancer comprises 20% to 25% of all new cancer diagnoses in women annually, with a growing prevalence over the past 20 years.⁽⁷⁾ In 2020 alone, 9 259 new cases of breast cancer were diagnosed — more than 10% of the total cancer burden in the country at the time.⁽⁸⁾ Factors such as changes in risk profiles, improved detection, enhanced cancer registration, and genetic predispositions amongst certain groups contributed to this increase.⁽⁹⁾

Significant advances in breast cancer treatment have improved recovery prospects, depending on factors such as the stage of the cancer, the individual’s age and overall health, as well as treatment efficacy.^(10)(11)

In high-income countries, the five-year survival rate for women diagnosed with non-metastatic invasive breast cancer exceeds 90%, with survival of localised breast cancer (Stage I) at an encouraging 99%.⁽¹²⁾

South Africa, however, faces challenges like resource constraints, poor-quality health care, lack of access to care facilities, and treatment being unaffordable, resulting in a mere 40% five-year survival rate.^(13)(14) Significant healthcare inequalities, influenced by geographic location and socioeconomic factors like education levels, income disparities, cultural factors, and healthcare infrastructure, lead to delays in diagnosis and challenges in disease management, especially in rural and underserved communities.⁽¹⁵⁾ This leads to patients presenting late, with the cancer having advanced to Stage III or IV.^(16)(17)(18)

The high incidence of breast cancer amongst working-age women underscores the growing challenge this disease poses to organisations’ human capital.⁽¹⁹⁾ Interestingly, remaining in paid work is of great importance in the recovery of cancer survivors, evident in a higher survival rate amongst this group. More than half of women in full-time employment turn to part-time work. While they suffer a temporary loss of work capacity, cancer does not take away their ability to continue working.⁽²⁰⁾ International studies on workforce participation during and after breast cancer treatment indicate that between 62% and 67% of these women continue to work, on average, eight years post-diagnosis.⁽²¹⁾ However, patients whose treatment plan includes chemotherapy face more than double the odds of losing their job.⁽²²⁾

Impact of breast cancer

Breast cancer treatment is complex, involving a combination of treatment strategies, such as surgery, chemotherapy, radiotherapy, biological therapy, and hormonal therapy.⁽²³⁾

A multidisciplinary team of specialists determines the individual’s treatment combination and sequence by considering the particular molecular subtype, the disease’s progression, and the patient’s risk stratification.⁽²⁴⁾ Consequently, patients receive a personalised treatment plan tailored to their specific needs. These treatments, however, are linked to distinct side effects that impact their work capacity and quality of life.^(25)(26)

Physical and psychological impact

The literature consistently emphasises the severe emotional distress experienced by breast cancer patients, including anxiety, depression, fear of recurrence, and body image concerns.^(27)(28) The level of emotional distress also fluctuates over the trajectory of the illness, starting from the first signs, moving through diagnosis, treatment, and follow-up, until remission and survivorship, or recurrence.^(29)(30) Distress is particularly evident during the short period between diagnosis and the start of medical treatment, with many survivors noting that receiving the cancer diagnosis was the most difficult moment in their journey. Suddenly, the patient must confront the possibility of losses, unresolved matters, and mortality while managing the reactions of their loved ones, leaving them insufficient time to fully absorb and process the implications of the illness. This may progress to depression, even during the remission phase,^(31)(32) and survivorship brings forth existential concerns and uncertainties.⁽³³⁾

Breasts as a female bodily feature are associated with female attractiveness and sexuality, and symbolise maternity and nurturing; therefore, breast cancer deeply influences a woman’s confidence, self-worth, and body image.⁽³⁴⁾ The physical changes and potential disfigurement as a result of breast surgery require both physical and emotional adjustment.

Treatment schedules, medical appointments, and the side effects of treatment often disrupt patients’ work–life balance, affecting their productivity, job performance, and career advancement.^(35)(36) Physically, the symptoms, disease stage, and the side effects of treatment, such as hair loss, fatigue, nausea, hormonal changes, cognitive changes, lymphedema, and menopausal symptoms, significantly disrupt their daily life, and patients require time to recover fully.⁽³⁷⁾ Psychological states such as anxiety, depression, and emotional distress are common amongst these patients.⁽³⁸⁾ The attitudes, support, and guidance they receive from their employers and co-workers have been proven to influence the ability of women to regain momentum and resume work.⁽³⁹⁾ Employees can contribute to a supportive environment where the individual has a sense of control and can positively adjust to the disease by adopting a ‘fighting spirit’ rather than a helpless or powerless outlook.⁽⁴⁰⁾

Financial strain and employment concerns

Patients soon realise their vulnerability and the importance of implementing modifications at work,⁽⁴¹⁾ and may turn to their employer in hopes of gaining support to sustain their job activities, reduce absenteeism, and gain a sense of job security. Unfortunately, not all organisations are prepared for or demonstrate insight into these needs.⁽⁴²⁾ Consequently, some cancer patients may feel fear or apprehension about potential stigmatisation or discrimination, leading to a reluctance to disclose their health status and seek the necessary accommodations.⁽⁴³⁾ This prevents the employer from timeously making the necessary adjustments to ensure continuity.

Many patients may find the costs associated with treatment overwhelming;⁽⁴⁴⁾ they face concerns related to employment stability, insurance coverage, out-of-pocket expenses, deductibles, non-covered services, and the costs of supportive care, including wigs and radiation lotions.^{(45)(46)(47)(48)} They also face indirect costs like transportation, lodging, and loss of income due to missed work.⁽⁴⁹⁾ Employees can claim illness benefits for up to two years from the Unemployment Insurance Fund (UIF), but the amounts are lower than the salaries of those in higher income brackets. Patients are also often unable to perform previously unpaid work such as domestic duties and childcare, forcing them to obtain outside help. The threat of financial ruin may lead to non-adherence to treatment and, thus, premature death.⁽⁵⁰⁾

The impact of demographics

A number of socio-demographic factors play a role throughout patients’ experience, including age, marital status, income level, education, employment status, and job characteristics.⁽⁵¹⁾ It is also vital to incorporate a cultural perspective, as people with the same health status may report a different quality of life because they have different values and expectations.⁽⁵²⁾ Spiritual beliefs and practices also offer patients comfort and hope, and influence how they perceive and cope with their illness, and cultural factors such as fatalism and a belief of having been bewitched affect patients’ perceptions of and approaches to treatment.⁽⁵³⁾

Job characteristics consistently predict work disability, with those in physically demanding jobs more likely to opt for disability status, while those with flexible hours tend to remain with the organisation.⁽⁵⁴⁾ However, immigrants, those from underprivileged social circumstances, and individuals with lower educational attainment are more vulnerable to job loss.⁽⁵⁵⁾

Discrimination at work

Misperceptions about an individual’s ability to work during and after undergoing cancer treatment are not uncommon amongst employers.⁽⁵⁶⁾ Employees living with cancer are at risk of unfair labour practices like demotion without consent, unfair performance appraisals, or exclusion from promotional opportunities.⁽⁵⁷⁾ Their employers and co-workers can make working conditions unbearable through actions such as unfair salary reductions,⁽⁵⁸⁾ employees being unfairly required to take unpaid leave,^(59)(60) or being assigned to lower-category functions⁽⁶¹⁾ without reasonable accommodations. Additionally, they can be sidelined by being excluded from important meetings, projects, and training.

Employers may not demote, dismiss, or give unfavourable performance reviews without providing cancer sufferers clear communication, reasonable adjustments, and workplace accommodations.^(62)(63) Reasonable accommodations in the workplace, such as adjustments to work schedules, modified duties, or ergonomic workstations are essential to facilitate their ability to perform their job duties effectively.^(64)(65)

In cases where the company has no suitable alternative positions, for example, where the job requires physical activity,⁽⁶⁶⁾ the employer requires legal guidance to prevent unfair conduct relating to promotion, demotion, probation, training, benefits, unfair suspension, re-employment, and occupational detriment.

Paid sick- and annual leave can be quickly exhausted by cancer treatment, and regular check-ups are not covered by sick leave in terms of the Basic Conditions of Employment Act.⁽⁶⁷⁾ Once exhausted, unpaid leave may be allowed at the employer’s discretion, but cannot be demanded.

In summary, breast cancer patients face a range of emotional and practical challenges, based on which a number of strategies are suggested below.

Strategies to support employees with breast cancer

There exists no single approach to effectively ensure the return to work of breast cancer survivors; each individual requires a unique plan based on her requirements. The wide variety of cancer treatment regimens and recovery amongst individuals results in unique physical and emotional needs. Supporting and integrating employees diagnosed with breast cancer requires a comprehensive approach involving various stakeholders, consideration of government policies, and company-level efforts that combine managerial strategies and HR practices concerning the specific characteristics of the work environment.^(68)(69)(70)

Government policies

There is a need to reform legislation, policies, and disability programmes to recognise the vulnerability of employees living with progressive diseases such as cancer, to ensure their protection and right to work.

Such reforms should include improved legal protection against unfair discrimination and special provisions for a framework recognising cancer management in the workplace, to foster their re-integration into the workplace.⁽⁷¹⁾ South Africa requires robust government policies and interventions that not only mandate but also incentivise employers to accommodate cancer patients, which efforts should include employee awareness, vocational rehabilitation for affected employees, and sufficient time off to attend treatments.⁽⁷²⁾

Management policies and strategies

It is vital that organisations are aware of their responsibilities in addressing the needs of breast cancer patients. Studies have shown that women with breast cancer have, on average, a 50% loss of work capacity.⁽⁷³⁾ Therefore, managers must offer and implement job adjustments that will motivate individuals to remain in the workplace.⁽⁷⁴⁾ These could include working shorter and flexible hours, working from home, and adjustments to physical job demands and measures of performance.^(75)(76)(77)

Organisations should ensure that workplace policies prevent discrimination against employees living with cancer, allow for disability accommodation, and protect patients’ privacy. The policies must accommodate flexible work arrangements and return-to-work programmes, and incorporate psychosocial support to help employees balance their health needs with work responsibilities.^(78)(79)(80) The policies must also provide for the implementation of a scheduled return-to-work practice, coupled with a mandatory fitness-for-work assessment before resuming work.⁽⁸¹⁾ Inflexible policies might prevent managers from providing appropriate personalised return-to-work support;⁽⁸²⁾ therefore, any return-to-work protocol for cancer survivors must consider both facilitating and hampering factors to be effective.⁽⁸³⁾

Policies and intervention strategies must also be developed within the context of the work characteristics of the organisation. There must be provision for vocational programmes that attend to cultural, linguistic, and educational gaps, especially for underprivileged individuals.⁽⁸⁴⁾ Occupational therapists could play a vital role in this process, particularly through assessment of an individual’s ability to work and the accommodations required.⁽⁸⁵⁾ Managers must also collaborate and communicate with health care providers to ensure the return-to-work plan remains relevant and effective.

The potential conflicts of interests that might arise require effective negotiations between employers and employees to reach a mutual understanding and agree on reasonable accommodations. Both parties require support, starting from the initial disclosure, through a return to work, potential disability considerations, and beyond. Addressing these issues requires a strategy that includes thoughtful and informed decision-making at every stage of the employee’s illness, and managers may need specialised training in this area.⁽⁸⁶⁾ Ethical dilemmas often arise in balancing conflicting interests, which may necessitate the involvement of a third-party mediator to develop an effective return-to-work strategy.

Ignorance and stigma often surround people living with cancer, as their current functioning, a move to a new position, or re-integration could be disrupted due to frequent absences to attend treatment and/or the side effects of treatments.⁽⁸⁷⁾ Fostering a supportive and inclusive work culture addresses stigma, and subsequently facilitates their re-integration into the workplace. Such a culture can be created if employers encourage empathy, understanding, and respect amongst colleagues and managers, aimed at creating a positive environment for all employees. It is vital that managers create this supportive and non-discriminatory culture based on comprehensive knowledge about the disease.

They should adopt a strategic approach that includes implementing structured procedures and encouraging transparent communication and regular feedback on performance expectations, especially for those in advanced stages or with uncertain prognoses.⁽⁸⁸⁾ Handling employees with sympathy, understanding, and encouragement helps address their feelings of uncertainty and isolation, and affirms their value to the organisation.⁽⁸⁹⁾

Managers must promote open communication so that employees feel comfortable discussing their health challenges.⁽⁹⁰⁾ Regular check-ins with employees undergoing treatment can also help maintain open lines of communication to assess their well-being, discuss challenges, and offer support and resources.⁽⁹¹⁾ Managers must also inform employees of their rights in the workplace and provide resources for navigating legal protections and workplace policies.⁽⁹²⁾

HR practices

HR practitioners must ensure they remain informed about their legal obligations regarding disabilities, as failure to uphold these can result in legal consequences and penalties. Employers are legally obligated to comply with South Africa’s labour laws, including disability accommodations, non-discrimination, and privacy protection.^(93)(94) Studies have shown that workplace-based interventions could substantially promote employee health.^(95)(96) HR practitioners could consider the following initiatives:

• Education, training, and technical assistance
  Line managers require knowledge to deal with cancer patients at each stage of the illness continuum,^(97)(98) in order to assess an employee’s employability. Managers should be offered training and technical assistance on appropriate communication, ethical decisions, conflict management, and designing and implementing tailored phased return-to-work approaches, in compliance with the legal requirements related to chronic illness.^(99)(100) Managers must also be cognisant of survivors’ need for self-actualisation.⁽¹⁰¹⁾ To support such initiatives, organisations could leverage the knowledge of cancer support organisations and educational institutions. Employers must be aware of and facilitate employees’ access to community support and healthcare system resources within their geographical region.^(102)(103)
• Shared knowledge capital
  Employers should create an informative online tool to provide line managers with information and resources such as policies, legal responsibilities, and return-to-work frameworks to enable them to effectively support employees with cancer.⁽¹⁰⁴⁾ Such a tool can also provide managers with helpful links to healthcare providers, complementary cancer services, social support groups, and resources within their geographical region, to ensure timely and appropriate intervention.⁽¹⁰⁵⁾ Companies could collaborate to develop a web-based tool that offers line managers easily accessible, concise online information on return-to-work support, which could reduce misconceptions, improve empathy, prevent potential ignorance, and foster a more inclusive culture.^(106)(107)
• Employee wellness and assistance programmes
  Wellness initiatives focused on holistic health — physical, mental, and emotional — have proven to positively influence employee behaviour and complement treatment.^(108)(109) Organisations should implement proactive and comprehensive employee wellness programmes aimed at encouraging a healthy lifestyle, which could include regular health screenings. These programmes should address modifiable lifestyle factors such as physical activity, body weight, and dietary intake. Programmes could also include confidential counselling services, mental health resources, and support groups.⁽¹¹⁰⁾
• Awareness campaigns
  Training and educating managers and co-workers about breast cancer and its impact can improve the re-integration of breast cancer survivors into the workplace.⁽¹¹¹⁾ This can reduce stigma and create a support network in the organisation.⁽¹¹²⁾ Both employees with cancer and their employers need to be knowledgeable regarding their legal rights and responsibilities, as well as the organisation’s policies.⁽¹¹³⁾
• Rehabilitation and accommodation
  Employers should follow a vocational rehabilitation approach where employee needs are assessed and re-training is provided, coupled with adjustments to their work structure and workstation.⁽¹¹⁴⁾ Occupational therapists and labour brokers are also essential in supporting employees in their transition back to work.^{(115)(116)(117)}
• Financial planning
  To prevent an overreliance on employers, employees should be provided access to information regarding medical insurance, gap cover, disability cover, income protection, life insurance, and severe illness cover. Establishing compulsory group cover and deducting the cost from staff salaries could ensure that employees are adequately protected. Employees should obtain and relay to the organisation details regarding their treatment timelines, which will also provide clarity regarding the potential costs to the employee and what the organisation needs to implement to ensure continuance in organisational performance.⁽¹¹⁸⁾
• Communication channels
  Employees are encouraged to share their cancer status with their employers. Sharing allows employers to make reasonable arrangements to accommodate them.⁽¹¹⁹⁾ However, legally, privacy rights must be respected, and employers should ensure that information is shared only for purposes of planning and support, with the employee’s explicit consent.

Conclusion

Addressing breast cancer care in the workplace is complex and multifaceted, requiring a supportive and inclusive environment⁽¹²⁰⁾ that considers legal, ethical, and practical issues. Given its prevalence, it is vital that employers understand the impact of breast cancer and support affected employees, as research affirms that most women return to work in the first year after a breast cancer diagnosis.⁽¹²¹⁾

Failure to establish trust and open communication holds dire consequences for both employee and employer. One dedicated professional said: “I stopped noting dates on my CV, to cover up the period I was treated for breast cancer”,⁽¹²²⁾ which reflects the fear and isolation these women experience. I would like to call on all organisations to increase awareness of breast cancer amongst employees, proactively evaluate their return-to-work strategies for breast cancer patients, and empower line managers to deal with these individuals effectively, with compassion and true understanding.