A nurse’s twenty-four-year journey with breast cancer-related lymphedema

Abstract

BACKGROUND:

Lymphedema is one of the major complications following breast cancer treatment. The majority of women who develop breast cancer are in their years of employment. Occupational functioning and employment are issues of significant concern among women with breast cancer-related lymphedema (BCRL). We present a single-case study of a nurse living with BCRL for more than two decades in the Midwestern United States, as an exemplar to explore the ‘return-to-work’ phenomenon.

METHODS:

A sixty-minute, semi-structured interview was conducted with a selected single case (“Linda”), following a pre-interview survey. Themes and sub-concepts were generated through constant-comparison of evidence within the case.

RESULTS:

Themes included: the feeling of being lost, functional impairments related to BCRL and bandaging, being limited yet not being limited, and experiencing different challenges with different jobs. Overall, returning to work with BCRL was a complex phenomenon involving interactions of the disease process, the work activity, the individual, and an array of contextual factors.

CONCLUSIONS:

Linda’s struggles, efforts, and adaptations at different career points were revealing and exemplified how individuals navigate the journey of returning to work with BCRL.

Keywords

Return to work cancer survivorship qualitative research psychosocial adjustment

1 Introduction

The number of individuals who are living following cancer diagnoses and treatment has increased [1, 2]. Breast cancer is the second most common cancer affecting women in the United States (U.S.), with more than 3.1 million survivors living in the U.S. [2]. The majority of women who develop breast cancer are still in their employment years [3]. Their vocational rehabilitation could raise significant concern. Employment affects not only financial but also social networking opportunities, structure of daily life and occupational identity [4]. Studies have shown that the return-to-work rate, work ability, and performance are greatly decreased among breast cancer survivors, compared to cancer-free populations [5 –7].

Lymphedema is one of the major treatment complications for breast cancer patients undergoing axillary lymph node dissection and radiation; this is referred to as breast cancer-related lymphedema (BCRL). Lymphedema is a condition in which fluid and protein accumulate in the extravascular interstitial spaces [8]. Lymphedema is associated with feelings of discomfort and heaviness, functional limitation, disfigurement, psychological distress, and an elevated risk of recurrent infection [9]. BCRL is conservatively estimated to occur in 20–40% of breast cancer survivors, with a life-long risk of development [10 –12]. Unfortunately, lymphedema cannot yet be completely cured, and related symptoms and symptom distress may lead to poor quality of life (QOL) in the long term [13, 14]. Current lymphedema management requires daily treatments such as manual lymph drainage, compression bandaging and garments, remedial exercise and skin care at clinic and at home [15].

Negative work outcomes may be associated with lymphedema in general. These include decreased work productivity [16, 17], delay in returning to work [18], reduced earnings [19], unemployment status [20, 21], more time off from work [17 , 20], and reduced work capacity [16, 19]. However, little is known from the perspective of survivors and the specific effects of BCRL on their career life. In this paper, we present a single-case analysis with the aim of describing, from a personal perspective, the phenomenon of ‘returning-to-work’ with BCRL.

2 Methods

Yin’s [22] case-study methodology, the investigation of a phenomenon within its real-life context, especially when the boundaries between phenomenon (the case) and context are not distinguishable, was employed (p.16). The case, “Linda” (pseudonym), completed an in-depth individual interview responding to questions about how BCRL influenced her work experience, following a pre-interview survey that captured demographic, work-, and disease-related information. The participant was given the opportunity to share anything about her thoughts, feelings, and experiences with BCRL. The International Classification of Functioning, Disability, and Health [ICF, [23]] was used to guide the development of interview questions and surveys. The ICF presents a holistic view of health outcomes by considering not only the disease-related factors but also the effects of environmental and personal factors.

Linda was selected to be the subject of this single-case study because she was articulate and had more than two-decades’ history of BCRL, as well as multiple career changes. These circumstances provided opportunities to reveal the phenomenon with different contexts and the changes of the conditions over time. Linda also had an excellent understanding of chronic illness, which allowed her to provide rich and detailed observations of how the disease process affected her. Both the case and the contextual conditions were examined. Constant-comparative data analysis was conducted within the single-case including: identifying and categorizing instances with similar properties that emerged from the data; comparing the properties with each set of categories, delimiting relationships among these categories and writing the relationships in the form of a narrative [24].

3 Results

3.1 Case context

3.1.1 Disease process

Linda is a 65-year-old Caucasian woman who has survived breast cancer for 27 years. She was married and had two young, school-aged children at the time of her initial breast cancer diagnosis. Her first breast cancer was treated with lumpectomy, removal of 20 lymph nodes, and external radiation to the right breast for 6 to 7 weeks. Linda underwent complete hysterectomy sixteen years after her initial breast cancer diagnosis, due to continuous bleeding. A second breast cancer then occurred twenty-four years after her initial diagnosis, at which point she underwent bilateral mastectomy with a prophylactic mastectomy (the left breast had lobular cancer in situ), lymph node removal, and breast reconstruction procedures.

Linda developed lymphedema three years after her initial breast cancer diagnosis and treatment when she was in her 30s. The symptoms and signs she reported related to lymphedema included: arm weakness, swelling, heaviness, redness, firmness, increased temperature, numbness, stiffness, aching, sleep problems, infection, lymphorrhea (weeping of lymphatic fluid), and difficulty with the fit of clothes. Furthermore, she experienced repeated infections of the affected arm (cellulitis). Other co-morbid health conditions reported included: depression/anxiety and hypothyroidism.

3.1.2 Work history

Linda was a nurse with a master’s degree in counseling. She resided in a medium-size city in the Midwestern United States. Linda worked in a variety of jobs which capitalized on her nursing training over her career life. At the time of lymphedema diagnosis, she was working as a school nurse at an elementary school. She saw 70–100 children a day, which she reported as stressful. Her duties included one-on-one assessment and management of students who were sick; routine health screenings for hearing, vision, and scoliosis; management of students’ immunization records; and providing health education for students and school staff. Then she became a parent educator in a public health program targeting children 0–5 years of age for one year. In this position, she made home visits after work/school hours to work with parents and their children to maximize readiness for school. After that, she served as a nurse coordinator/consultant for a breast and cervical cancer screening program for 15 months; worked for a substance abuse detection and intervention program for two years; worked as a community health nurse and case manager in a federally-funded infectious disease program. And then, she worked as a nurse consultant/coordinator in a national quality assurance program and served as a quality improvement coordinator (e.g., education and guidance) in an institution of higher education for 11 years, respectively. Linda worked full-time (40-hours-per-week) for her entire career. She used two-months of sick leave when undergoing treatment for breast cancer, and occasionally took a few hours off during work days for lymphedema clinic visits and used several accumulated days of sick leave when under treatment for BCRL-related infection. Fortunately, She always had employer-sponsored medical insurance with good coverage.

3.2 Themes

Both the struggle of finding diagnosis of and treatment for lymphedema and the long-term physical and emotional distress had adverse influence on Linda’s work life. However, she overcame those challenges and continued her career growth.

3.2.1 The feeling of being lost

Linda shared that her most challenging experience with BCRL was the struggle at the beginning, where she engaged in a long period of searching for a diagnosis and treatment of lymphedema. She developed symptoms three years after her initial breast cancer diagnosis when there was no information about lymphedema in the area where she was living. She recalled that her healthcare providers only recognized the presence of a problem after repeated episodes of infection. Each time, she was treated as if she were experiencing a single, discrete infection and was prescribed antibiotics without any further examination or information. Even when the swelling from lymphedema became readily apparent, she felt ignored by all of her doctors: her surgeon, her medical oncologist, and her radiation oncologist.

Linda said, “I went all over, to different doctors trying to get help, and they all turned me away. At that time, that was back in ‘93 ... because I’ve gone to all these different physicians and nobody would help or didn’t know how to help.” It took three years to finally learn that her diagnosis was BCRL and find someone who could manage it.

“It actually wasn’t a ‘diagnosis of lymphedema’ at the time. They didn’t treat lymphedema (at the time) when I was diagnosed, or when I went in for the cellulitis: they treated the infection. There was no other treatment available in this locale at that time. And then how I learned about lymphedema treatment was when I worked in [cancer screening], ‘cause I worked with the whole state, and then I found out there were one or two lymphedema programs, and my arm was swollen. That’s how I ended up getting treatment at that point.”

During the years of searching, Linda was frustrated, helpless, angry, and felt like she was being ignored. “They didn’t identify it, and they left me to struggle to find my own answers, and it took years to get the answers.” She believed that the root cause of her struggles with her health and frustration was due to profound lack of awareness and resources for identifying and treating lymphedema. She felt the clinicians were disinterested in learning more about her condition (lymphedema). “If there had been adequate treatment at the beginning, outcomes would’ve been different.” Linda felt she ‘survived’ lymphedema much the same way as she survived breast cancer. She perceived her journey as being filled with danger and challenges. “I used to say, ‘The lymphedema used to remind me of how lucky I am to still be living,’ and I still say that.”

3.2.2 Functional impairments related to BCRL and bandaging

Linda reported that not only lymphedema but the short-stretch bandaging used for reducing lymphedema-related swelling, affected both her physical and emotional functioning.

3.2.2.1. Reduced physical function. Linda recalled ways that BCRL impeded her functioning. “I guess when I look back upon my career, carrying (things) is the biggest, one of the bigger things; that’s always been the challenge as a result of lymphedema.” She could not do as much lifting and carrying because of arm weakness, sensations of heaviness, and because she feared that these activities would cause even more swelling. However, carrying things was part of so many activities that this limitation affected her on a daily basis.

Linda explained how difficult the bandaging (Photograph 1) had made her work and daily life. It limited her ability to use a computer keyboard and writing for taking notes, tasks that were essential for all of the jobs she held as a nurse. Linda described it like “wearing a boa constrictor on your arm.” She said, “It’s harder to do everything. It would interfere with almost my whole work day.” She gave examples, such as eating, going to the bathroom, and driving, especially if the car did not have an armrest for support. Her bandaging also interfered directly with her work activities. One time when she went through the airport security wearing bandage wraps during her business trip, she was pulled out of the security line for a body search and asked to unwrap the bandages. Afterward, she had to wrap her arm back up. She felt this was ironic, as it could be inferred that the security agents deemed her a threat when she herself felt impaired.

Photograph 1.

Bandaging treatment for breast cancer-related lymphedema.

The bandaging also created considerable discomfort which would cause emotional distress and compromise functioning. Linda described, “When you’re wearing them 24-hours-a-day, I feel like I’m gonna pull my hair out because they’re so uncomfortable.” The discomfort impacted her motivation to work because she was “just always agitated.” At times, she also wore a compression sleeve and gauntlet (Photograph 2), but these were also uncomfortable and hot. The hotness was especially problematic in the summer and during outdoor traveling, when she sweated more. Using a compression sleeve also was concerning as the top edge rolled down easily and the roll caused an area of constriction and decreased circulation, which could be potentially hazardous, as well as uncomfortable.

Photograph 2.

Compression sleeve and gauntlet for breast cancer-related lymphedema.

3.2.2.2. Frustration caused by chronic symptom management. Linda’s emotions were initially affected by her struggles with identifying BCRL. Once treatments were initiated, additional emotional struggles emerged. She felt discouraged because the treatments (e.g., bandaging) did not cure her BCRL and did not always even reliably control her symptoms, despite her compliance. “It always just seems to go back to a certain state. I would try to follow every single rule they’d give me about using the wrap all the time and having a sleep garment. I got a couple of the pumps that were supposed to be able to help; none of them really seem to control it.” As with many other chronic conditions, it was hard for her to maintain the motivation to adhere to treatment when her efforts did not seem to correspond with improvement. “I’d give up on the wraps and say I’m just not gonna worry about it.” Linda had a busy career life, and managing bandaging added a time burden to her work-life routine during the acute phase of BCRL.

Linda felt the bandages and compression sleeves distracted from her job role. Such appliances drew unwanted attention from others. She said, “When I’m trying to do certain things, like a presentation, it would be bothersome. My role is to deliver a different message, not to deliver that I’m needy.” While not visible to others, this was certainly an unwanted distraction for her. Additionally, Linda described herself as having always been self-conscious, and developing BCRL at a young adult age was upsetting and increased her negative body image. “I feel I got old early. I got lymphedema when I was in my 30’s, so then it affected my clothing. It affected how I perceived myself. It made me feel old before my time.” She did not like to have her bandaged arm visible to others and always tried to cover it. She felt it did not look good because of the bandaging and the drain related to lymphedema infection.

3.2.2.3. Fear and uncertainty due to the risk of infection. Linda’s lymphedema was initially triggered by an infection in her arm that continued to recur and these recurrences became her biggest fear. She described them as “frightening,” as she didn’t know how to handle these while watching the symptoms develop rapidly.

“When I get the infections, you know, you get, you’re really sick, like you get high fevers, your whole body aches. I’d have to get treated before I could function again. You’d get worried because you’d start seeing the rash move across your body. I’ve been traveling before when I’ve had lymphedema go out of control, and it’s really frightening because you don’t know how to handle it.”

Sometimes, the infection occurred at inopportune times, which could make the situation even worse. Linda recalled times when infection flared on the weekend or on holiday, when the antibiotic medication was hard to access, which resulted in her having to go to the emergency room repeatedly. She reported another episode when the BCRL-associated cellulitis occurred early in a business trip, and the antibiotic failed to control the condition. She became too sick to function and had to cancel the meeting mid-way through. Throughout her working years, management of infection induced by BCRL was the main reason for her use of sick leave.

3.2.3 Being limited yet not being limited

Even though she shared many difficult experiences and restrictions related to her BCRL, Linda still worked full-time and experienced many points of growth in the path of her chosen career. Her success does not seem to be fully explained by the simple motivation for financial income or a desire to be independent. Personal attributes also seemed to contribute to her striving to ‘not be limited’ in her work. The attributes included an ability to take different perspectives and a sense of self-efficacy for developing coping strategies when challenges were faced.

3.2.3.1. Not perceiving herself as limited. Even though she experienced repeated infections that made her sick, and even though bandages and BCRL made everything hard to do, Linda said, “I don’t consider it as a limiting thing, other than I consider it ‘a pain in the neck’ and a hassle.” Her ability to take this perspective seemed to be an important factor in her ability to maintain her work objectives. Others with the same obstacles might feel too overwhelmed to continue working. On the other hand, she also said, “I don’t consider [lymphedema] as limiting me and my ability to work except for maybe heavy lifting ... I did a lot of training, and you’d have to take your materials with you, your computers and all of that, but I never had to lift like a merchandising way.” She perceived that the essential parts of her jobs were her knowledge and expertise which she didn’t think could be easily limited by lymphedema. While her ability to do certain tasks involving her arm (i.e., carrying things and typing) might be limited, she didn’t perceive them as essential elements of her work. Thus, the challenges faced may not be as predictive of work success as the self-limitations perceived by the individual. In Linda’s case, the impact of BCRL was ameliorated by her appraisal.

3.2.3.2. Developing coping strategies. An area of strength for Linda seemed to be her ability to adapt to the circumstances in which she found herself. She developed many strategies to overcome her functional limitations due to BCRL. For example, to address limitations in lifting and carrying, Linda started using “really good” roller bags which were sturdy and easy to roll. She learned to use voice-recognition technology for computer work to decrease the amount of keyboarding. She also adjusted her body mechanics and workstation set-up to make typing and writing easier. She started wearing shawls to cover her lymphedematous arm, for protective and aesthetic purposes. Linda developed strategies specifically for business travel. She packed more carefully for travel, trying to avoid extra, unnecessary weight. She was also able to work with her health care providers to obtain pre-emptive antibiotics to prevent infection and had compression sleeves ready for air travel. Over time, she built a working partnership with her primary physician, so that when infections occurred, she could have a quick response and avoid the hassle and delay of waiting for an appointment to receive treatment or an urgent care visit.

3.2.4 Experiencing different challenges with different jobs

Linda made multiple job changes in the years after she developed BCRL. Each change brought environmental change, as well as the change in the specific work tasks associated with the job. At times, these changes were beneficial, but they also could present new challenges and barriers. Linda had continued searching for years for information that would finally identify BCRL and potential treatments, even while continuing to work. Interestingly, she finally obtained this information when she changed jobs and began working with a program that served breast cancer survivors. She said, “That’s where I got tied into the network of people who really manage breast cancer, so that’s when I, myself, got more knowledge of what might be available (for lymphedema).” The work activities as coordinator of the cancer screening program brought her both benefits and challenges as a survivor with BCRL. For this job, she had the opportunity to connect with different breast cancer treatment centers across the state, which provided her with access to valuable personal resources for BCRL treatment. On the other hand, the coordinator job role required frequent car and air travel, which was challenging for her swelling arm. She recalled, “The training in [the program], that was the most carrying and driving I did. I traveled by airplane, too, and air travel is hard when you’re working on lymphedema.”

Linda’s work as a school nurse presented a different set of hazards. She was exposed to sick children every day, which increased her risk of contracting illness or infection. She believes it was her work in this environment that triggered the initial onset of lymphedema and arm infection: “I think it was in the school nurse’s office. I must’ve been exposed to lots of stuff, I’m sure, and being around infection was a part of it, and there was some.” In summary, as Linda’s work life changed, the types of challenge lymphedema brought also changed. With each new challenge, Linda was able to evaluate the potential barriers and consider material and strategic resources for coping.

4 Discussion

Linda expressed the feeling of being lost for a long time because of limited resources for BCRL, the fear of infection, and the struggles with functional impairments and different challenges with different jobs. After all of these, she still perceived herself not being limited her work and shared her coping strategies along the way. We discuss how all of these factors came together to influence Linda’s working activities and shape the return-to-work experience.

4.1 Interaction of the person, BCRL and work activity

We selected Linda for this case study because of her extensive experience with BCRL in the context of uninterrupted work history. Through interviewing, Linda illustrated for us how BCRL affected her return-to-work experience. Based on our findings with this single individual, we have created a map of the themes which emerged from Linda’s narratives and their relationships (Fig. 1).

Fig.1

The interaction of Linda, BCRL and work.

Through analyzing Linda’s case, we found the return-to-work experience was built on a number of interactions between and among the work tasks, the BCRL condition, and the person. BCRL limited Linda’s work activities by affecting a broad array of physical and emotional functions. The limitations were heightened when the functions did not match her work activities’ demands. Linda was limited in some physical tasks, such as lifting and carrying moderately large/heavy objects, keyboarding, and difficulties associated with travel. As a nurse, these physical requirements might not be essential for her job description but were necessary for carrying out her daily work tasks. On the other hand, the clinical work also provided a hazard to her BCRL condition by adding the incidence of infection. The program coordinator job involved much travel by driving and air flights, exacerbating her arm swelling.

Studies rarely discussed the contribution of occupational factors and working conditions to breast cancer survivors’ health. Among general breast cancer survivors, one study showed that survivors who have high stress and sedentary jobs are likely to have higher severity of symptoms, including fatigue, cognitive limitations, and depression, than those who have less stress work and more aerobic activities [25]. The interaction of work activity with breast cancer survivors’ health underscores the need for professional support in occupational rehabilitation during years of survivorship. However, there is a dearth of information regarding the clinician’s role of informing survivors about the occupational hazards in making the appropriate adjustment for work content [26]. In particular, the survivors who develop treatment complications (e.g., lymphedema) may need special assessment for the fitness of work, ensuring effective performance without risk to them.

The path to work-related problems can also be initiated by the incidents of infection and treatments associated with BCRL, which notably are on-going due to the chronicity of the BCRL. Similar to other chronic illness, the complications are sometimes more threatening to patient’s functioning than the illness itself [27]. Infection not only worsens BCRL symptoms, such as swelling, but brings more individual pain and constriction [28], leading to functional work impairments and negative work engagement [16]. The BCRL-associated treatment also created inefficiencies, such as through unwanted attention/distraction and the demands of daily self-management. Keeping a sense of normalcy was one of the factors reported by the study that contributed to women’s work-return decision after breast cancer treatment [29]. However, survivors, like Linda, who developed lymphedema might lose the normality of work and daily life they seek. Moreover, the complexity of lymphedema self-management, such as bandaging and manual lymph drainage, remains the top challenge for new and old patients [30]. Difficulty in balancing time for treatment and life demands (i.e., work) is identified as a barrier to treatment adherence [30]. A study also reported that time-consuming therapeutic modalities could be one of the main factors associated with limited employability after BCRL [31].

Self-efficacy and coping skill have been reported to be significantly associated with successful work-return among breast cancer survivors, in general. [32 –34]. Linda demonstrated a high level of self-efficacy and perseverance with work tasks, e.g., being an early adopter of voice-recognition technology and developing a number of strategies and healthcare relationships to prevent mishaps when traveling. While Linda was able to use procedural and instrumental coping adroitly, she also used internal coping strategies effectively. Foremost, she did not perceive herself to be incapacitated by her limitations. Rather, she viewed barriers as challenges that required problem-solving and adjustment. Studies have shown that self-perceived constraints and appraisal of work ability, as well as the meaning to work [29, 35], were strongly associated with work engagement among breast cancer survivors [36, 37]. Even in Linda’s frustration with her health care providers, she did not feel compelled to stop working until a diagnosis was made and the medical treatment prescribed. Rather, she continued with her chosen career as she searched. Ultimately, she found what she had been seeking, diagnosis and treatment, when she integrated her professional and personal priorities by choosing to work for an organization that served breast cancer survivors. Linda’s case showed that the individual’s own actions can play an important role in adjusting to the return-to-work.

4.2 The changes of the person and the outer world

In our published review on return-to-work among breast cancer survivors [5], individual factors (i.e. marital status, age, co-morbidities, disease sequel), work and related environmental factors (i.e. advisement from health professional, medical resource), and societal and policy supports (i.e. social and coping resources) were identified as important to the return-to-work process. These factors combined in various ways to affect work outcomes, such as productivity [38, 39]. As Yin [22] has pointed out, understanding of the phenomenon should be done within its real-world context and yet there may not be evident boundaries between the phenomenon and context [22]. The context of the phenomenon is changing from time to time. We drew the components from both Linda’s environment(s) and from within Linda herself over time that could contribute to our understanding of returning-to-work (Fig. 2).

Fig.2

Linda’s life trajectory of breast cancer-related lymphedema.

Significantly, Linda herself has been changing. With age and experience, her interpretation of her experiences with work-return in relation to BCRL has evolved. Based on Linda’s story-telling, she focused more on her own condition when she was a busy career woman with young children; she has been more available to advocate for lymphedema after her children grew up and her recent retirement. Besides age [32], the sequel of disease and co-morbidities [34 , 40] were predictors of work-return outcomes in other studies. Linda also developed other conditions, such as hypothyroidism, depression, and urinary incontinence that have influenced her overall well-being, and which required the re-examination of her priorities to maintain health and work from time-to-time. Moreover, Linda had a second occurrence of breast cancer, which likely shaped her perspectives towards the phenomenon of BCRL-associated return-to-work. While we did not make a pointed comparison of Linda to “first-time survivors,” we did observe at this point in her health trajectory, her resolve to return to work, as a means of seeking normalcy, and her focus on successes, as opposed to focusing on anxieties. We must recognize and accept, however, that personal experience with BCRL changes constantly and the individual is part of those changes.

As we know, the work demands such as physical and mental stress or schedule flexibility of the job could influence work outcomes [41 –44]. Linda’s career changed along the way, which was influential regarding her work experience and BCRL. She experienced changes in her tasks and duties, both at home and at work, which brought new challenges and opportunities for exploring and coping with lymphedema management. Linda had substantial experience in healthcare, as a professional nurse. During the interview, Linda’s professional insight towards the problem was apparent as she identified problems within the health system and public health efforts. Not only did she discuss the ignorance of health providers, but she also touched on legal issues related to employers’ asking about medical conditions. Later, Linda finished a master degree in Counseling. Because of this educational background, she likely had a different level of insight that may have motivated her to continue seeking information about BCRL and to be diligent with self-care, even at times when she experienced low motivation. A person without a similar level of training and work experience might not be as well-informed. Her continuing education and professional experience developed her skills of coping, such as navigating functional and interpersonal barriers at work or her emotional adjustment to having a frustrating chronic condition. The majority of studies only identified the positive association of work-return and education level among breast cancer survivors [32, 45]. Linda’s case indicates us that individual’s education and professional background could have a particular influence on their perception and coping strategies towards the disease and return-to-work experience.

The changes of the outer world would have shaped Linda’s experience of returning-to-work with BCRL in important ways. Social supports and resources were identified by studies as greatly important in the work-return process [34, 46]. At the time that Linda initially developed lymphedema (the early 90s), as she said, there were no lymphedema programs in her area and physicians turned her away; the local lymphedema program was started years later and is more developed at present. The accessibility to the medical resources of lymphedema has evolved. Public awareness and knowledge of BCRL were, likewise, limited. Bandaging treatment and compression garments/sleeves were adopted years after Linda began to experience symptoms of lymphedema, and, while the use of these items provided her with better control of lymphedema, it also brought new challenges at work. Additionally, the treatment techniques for BCRL, guidelines for practice, and industrial products likely have evolved since their introduction. Linda was able to compare the effectiveness of some practices and products to others, as well as her efficacy with self-care, over time.

We return to the fact that little is currently known about the challenges faced by breast cancer survivors who attempt to return to the workforce while also managing BCRL. Yin [22] reminds us to contextualize such material, which leads to the conclusion that each person/phenomenon is unique. Even so, Linda’s experience provides us with a starting point for examining the phenomenon more broadly. Future work will focus on working toward better understanding how survivors’ desire to return to work can be best supported through future health care interventions.

5 Conclusion

Returning to work with BCRL represents a complicated phenomenon at the intersection of the individual, the disease processes, the required work activities, and an array of contextual factors. We have presented a case study that details the subject’s experience over two decades, two episodes of cancer, multiple job changes, and significant changes in the healthcare environment. Our case example provides a personal perspective on how the lack of medical resources for BCRL can have a negative impact on health and well-being. Our case example also provides examples of perseverance and personal resiliency that helped the survivor overcome BCRL-related barriers to return-to-work.

Conflict of interest

None to report.

Footnotes

Acknowledgments

The authors thank the participant sharing her experience and perspectives. Funding support for this study was provided by the Toni and Jim Sullivan Endowed Research Fund at University of Missouri Sinclair School of Nursing.

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