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Logo of nihpaAbout Author manuscriptsSubmit a manuscriptHHS Public Access; Author Manuscript; Accepted for publication in peer reviewed journal;
 
J Pain Symptom Manage. Author manuscript; available in PMC 2010 December 1.
Published in final edited form as:
PMCID: PMC2795115
NIHMSID: NIHMS142640

Breast Cancer Survivors’ Experiences of Lymphedema-Related Symptoms

Mei Rosemary Fu, PhD, RN, ACNS-BC and Mary Rosedale, PhD, PMHNP-BC, NEA-BC

Abstract

The purpose of this study was to explore and describe breast cancer survivors’ lymphedema-related symptom experiences. As a serious chronic condition from breast cancer treatment, lymphedema, or persistent swelling, is caused by chronic accumulation of lymph fluid in the interstitial spaces of the affected limb or surrounding areas. While significant prevalence of ongoing multiple symptoms have been reported, little is known about how survivors with lymphedema perceive and respond to lymphedema-related symptoms in their daily lives. This study employed a descriptive phenomenological method. Thirty-four participants were recruited in the US. Three in-depth interviews were conducted with each participant; a total of 102 interviews were completed, audio-taped, and transcribed. Interview transcripts and field notes were the data sources for this analysis, which was part of three larger studies. Data were analyzed to identify the essential themes within and across cases. Four essential themes were revealed: living with perpetual discomfort; confronting the unexpected; losing pre-lymphedema being; and feeling handicapped. Participants experienced multiple symptoms on a daily basis. Distress was heightened when women expected symptoms to disappear but instead they remained as a “perpetual discomfort.” Moreover, distress was intensified when symptoms evoked unexpected situations or when symptoms elicited emotional responses powerful enough to change perceived personal identity. Findings suggest that symptom distress may encompass temporal, situational and attributive dimensions. Prospective studies are needed to examine lymphedema-related symptom distress in terms of these dimensions so that more specific interventions can be developed to target distress occurring in each dimension.

Keywords: Symptom, symptom distress, lymphedema, breast cancer

Introduction

Among the 2.4 million breast cancer survivors in the United States [1], approximately 30% have lymphedema [2,3], a potentially serious chronic condition defined by chronic accumulation of lymph fluid in the interstitial spaces of the affected limb or areas due to injuries to the lymphatic system from breast cancer treatment [4]. Breast cancer survivors with lymphedema have reported poorer quality of life than those without lymphedema [5,6] and studies have reported that swelling in the limb makes survivors feel stigmatized and frequently elicits social anxiety, depression, emotional distress, and disruption of interpersonal relationships [7,8]. Lymphedema and related symptoms cause time off work in more than 80% and affect employment status in 9% (9).

Although the most visible manifestation of breast cancer-related lymphedema is swelling, survivors with lymphedema often experience multiple symptoms, such as pain, tenderness, soreness, aching, heaviness, tightness, firmness, numbness, fatigue, and stiffness in the affected limb [3,5]. Few studies have been done to examine the prevalence or occurrence of lymphedema-related symptoms [3,5] and quantitative studies could provide important information about the occurrence of multiple symptoms in breast cancer survivors with lymphedema. These types of data do not, however, capture the experiences of how women perceive and respond to lymphedema-related symptoms in their everyday lives. It is not known whether survivors with lymphedema use the same concepts as other groups of patients to characterize their experience of lymphedema-related symptoms. To adopt a framework a priori is to decontextualize interactions of survivors with lymphedema from the broader context of their daily lives.

Qualitative studies have revealed that breast cancer survivors with lymphedema may feel hopeless and distressed in knowing that there is no cure for lymphedema through a medical approach and may encounter difficulties in finding help and receiving information about lymphedema from health care professionals [7,10]. Breast cancer survivors with lymphedema may feel distressed by physicians’ insensitivity and limited knowledge about lymphedema, as well as lack of available treatment centers [7,8]. Yet, none of these qualitative reports indicated the exploration of the women’s experience of lymphedema-related symptoms in their daily lives.

Little is known about how breast cancer survivors with lymphedema perceive their experience of symptoms and how symptom experience influences their daily lives. Methods of descriptive phenomenology [11,12] enable researchers to explore experiences of everyday life. From the perspective of knowledge development, a descriptive phenomenological study of breast cancer survivors’ experiences of lymphedema-related symptoms was warranted for two main reasons. First, other researchers had focused on the prevalence or occurrence of lymphedema-related symptoms in relation to quality of life using quantitative approaches [3,5], rather than focusing specifically on the women’s everyday experiences. Second, exploration of survivors’ everyday experiences can expand perspectives of knowledge beyond the concepts of symptom prevalence, occurrence, severity, or distress. Therefore, it was important to explore and to describe breast cancer survivors’ experiences of lymphedema-related symptoms.

Methods

The philosophical underpinnings for the study were based on certain assumptions grounded in Husserlian descriptive phenomenology explicated in his book Ideal [11] and other pertinent resources [12, 13]. The assumptions are: (a) “Natural knowledge begins with experience (Erfahrung) and remains within experience” [11, p. 45]; that is, breast cancer survivors’ experiences of lymphedema-related symptoms emerge from the experiences in which women interact with the condition of having lymphedema; (b) “Every experience…has intentionality”[11, p. 222]; that is, breast cancer survivors can purposefully reflect on their experience of having lymphedema and having any related symptoms.

This study was completed as part of three larger investigations of breast cancer survivors’ experience of managing lymphedema within diverse racial and ethnic groups (i.e., White, African American, and Chinese American). The first aim was to delineate the overall phenomena of breast cancer survivors’ experiences of managing lymphedema [14]. The second aim was to describe survivors’ experiences of living with lymphedema, including their experiences of lymphedema-related symptoms. The study reported here was based on data focusing on breast cancer survivors’ experiences of lymphedema-related symptoms.

Recruitment of Participants

After institutional review board approval, patients were invited to participate in the study. The study invitation was distributed to potential participants by oncologists, nurses, and physical therapists. Then, the first author met with each woman and confirmed the study criteria as well as assessed each participant’s lymphedema based on a four-stage classification system evaluating skin condition and degree of swelling [15]. Table 1 presents detailed criteria for each of the four stages.

Table 1
Staging of Lymphedema

Sample and Participants

A purposive sampling technique was employed [14] to enroll women who met the eligibility criteria: (a) 18 years of age or older; (b) completed surgical treatment for breast cancer at least three months before enrolling in the study; and (c) a diagnosis of lymphedema for at least one month prior to enrolling in the study.

In a phenomenological study, a minimum sample size has been six participants [16]. The adequacy of the sample size is determined by the quality of the data, that is, recruitment of participants continues until similar data emerge or once participants repeat each other on the description of their experiences of the phenomenon [16,17]. Strong similar data emerged at the time when the first author finished the interview of the eighth participant for the Whites, the eleventh participant for Chinese Americans, and the ninth participant for African Americans. To ensure that any important information would not be missed, the first author continued recruiting and interviewing two extra participants in each ethnic group. No new information emerged in the interviews of the last two participants in each ethnic group. Consent to the study was obtained from each participant. Altogether, 34 participants were recruited in a Midwest state (12 participants) in 2002 and in East Coast metropolitan areas (22 participants) of the United States from 2005 to 2007.

The majority of the women were over 50 years of age. Among the 34 women, 12 were having intensive lymphedema therapy for the exacerbation of arm swelling. All participants had lymphedema beyond Stage 0; more minority participants were observed to have more severe lymphedema (Stages II & III). Twenty-two women were employed. Ten had jobs that did not require heavy lifting and frequent use of their affected arms and hands (such as teacher, cytological technologist, transcriber, office manager, or psychologist); seven had jobs that required heavy lifting or constant use of their affected arms and hands (such as EKG technician, nurse’s aide, hairdresser, data processor, factory worker, waitress, or pathology lab technician); and five had jobs that required constant typing or filing of documents (such as administrative aide or office worker). Table 2 provides additional information about the participants.

Table 2
Characteristics of Participants (n =34)

Data Collection

The first author conducted a total of 102 interviews, that is, three in-depth interviews with each participant. The women chose the place for the interviews, including their own houses, private offices or rooms at clinics where only the first author and the particular participant were present during the interviews. Each interview lasted from 70 to 140 minutes and was recorded using a digital audio-system. All the interviews were professionally transcribed and checked for accuracy.

To study symptom experiences of breast cancer survivors with lymphedema, during each interview, each participant was given at least three opportunities to report her perceptions and major events related to her symptom experiences. The participants were asked to answer the broader question: “What is it like for you to have lymphedema?” as well as specific questions: 1) “What symptoms have you been having since your diagnosis of lymphedema?,” 2) “What symptoms bother you? Explain how.;” and 3) “Please describe how your life has changed with those symptoms.” General probes were also used during the interviews, such as “Please tell me more about that,” “How did that make you feel?” and “What else did you also do?”

Data Analysis

A descriptive data analysis method with intuitive reflections was employed using strategies of constantly “comparing and distinguishing, collecting and counting, presupposing and inferring” [14] (p. 93). Central to this method was a systematic classification process of text data into fewer content-related themes that share the same meaning [18,19]. This was accomplished by having a group of qualitative researchers work with the authors throughout the study to examine the data, compare codes, challenge interpretations, and inductively develop themes. Through discovery of recurring themes and remaining close to the data, a fuller description of how women perceived lymphedema-related symptom experiences emerged.

Specific data analysis procedures included: 1) reading the transcripts several times to gain a broad understanding of the text; 2) meeting with a group of qualitative researchers who reviewed transcripts, identified key quotations and discussed key codes related to the research question; 3) combining the coded quotations into one file and confirming the accuracy of the code and quotation; 4) carefully reading quotation files with the group and identifying major themes by putting key coded quotations together for each research question; 5) meeting with the group, reviewing major themes together, and engaging in active dialogue to resolve any discrepancies; and 6) reviewing the transcripts and validating the structure of themes alongside interview data.

In this way, each idea was carefully analyzed in every transcript. The essence of each woman’s experience was differentiated, compared, and summarized. Carefully selected examples exhibited the essence with maximum of evidence [12]. The essence of breast cancer survivors’ experiences of lymphedema-related symptom were fashioned into essential themes illuminating the meanings of the experience.

The credibility of findings, in terms of integrity and accuracy, was supported through the investigator’s discussions with participants and a group of doctorally-prepared expert researchers who validated the data analysis. The authors finally discussed the findings by integrating relevant literature. In line with Husserl’s position that “each has his place whence he sees the things that are present,” (11, p.95), the authors also invite readers to appraise the credibility of findings on the basis of their own practice experience [13].

Results

Participants described their experiences of multiple lymphedema-related symptoms in the affected arms and hands. Symptoms included “swelling,” “pain,” “soreness,” “tenderness,” “aching,” “burning,” “stabbing,” “numbness,” “heaviness,” “tightness,” “rigidity,” “fatigue,” or “tiredness.” On a daily basis, the women experienced at least three to ten of the symptoms along with swelling. Four essential themes were derived from the women’s experiences of ongoing multiple symptoms: (a) living with perpetual discomfort; (b) confronting the unexpected; (c) losing pre-lymphedema being; and (d) feeling handicapped. The names used below to report the findings are pseudonyms.

Living with Perpetual Discomfort

Although some participants had lymphedema during breast cancer treatment and some had it several years after treatment, the women were surprised by the sheer volume of symptoms that came with lymphedema and with the realization that symptoms never disappeared, but instead, stayed as part of their lives. Echoing the views of all, one participant remarked, “Until you get lymphedema, you cannot really know what it is. And, you are the only one who is bearing this plethora of perpetual discomfort every day.” The unexpected perpetual presence of multiple symptoms intensified distress and anxiety. Participants expected the symptoms to disappear after their initial or subsequent intensive lymphedema therapies but confronted the reality that swelling and other symptoms “are here to stay.” Contrasting her seven years of lymphedema with her breast cancer experience, Mrs. Kathy, a white woman, remarked:

With breast cancer, you go in for your treatment, once cancer is under control you are kind of done with it [breast cancer]. With lymphedema, you will never be done with it because you are having this big arm, pain, burning, heaviness, and soreness every day. It’s something that you have to live with for the rest of your life.

Stabbing, pain and burning caused significant and unrelenting distress. Mrs. Lou, a 56-year-old white woman with five years of lymphedema, vividly portrayed the daily nature of her pain saying, “At least once in a day, I have this burning or stabbing pain in my upper arm as if someone takes a lighted cigarette and holds it to my flesh and stabs me with a sharp knife.” Although intensive lymphedema therapy and daily care helped some women to decrease the degree of swelling and heaviness in the affected limb, they continued to endure distressing symptoms on a daily basis. Ms. Kong, a Chinese data processor with eight years of lymphedema, conveyed how lymphedema-related symptoms were not static but instead, changed during the course of the day and drastically affected her day-to-day life. For several years, her affected arm was twice the size of her non-affected arm. Describing the diurnal variation of her symptoms, she talked about how she wrapped her affected limb during the night and wore her compression sleeve during the day:

In the morning, my arm feels much better, although it is still swelling and feels heavy. Once I start my work, I type and type, my arm becomes heavier and heavier, bigger and bigger, at the end of day, I cannot even move my arm and curve my fingers. It is so distressing.

The physical discomfort from ongoing swelling and other symptoms triggered fears and apprehensions in the women about cancer recurrence, which made some feel “scared” and others concerned that they were becoming some “hypochondriacal.” Mrs. Marnie, a 53-year-old white woman who had lymphedema for three years, described her recurring fear:

Whenever I take a look at my ugly arm, it’s just like a giant bomb to me. I am thinking, someday, it will bring my cancer back. The mere thought of that scares me.

Ms. Ming, a Chinese woman who worked at a Chinese food company in Chinatown, echoed:

I have to carry a lot of heavy boxes of [Chinese] dumplings for my work. Even if I don’t care about the ugly appearance of my puffy arm, I am constantly worried that my cancer will be back if my arm gets bigger and bigger, heavier and heavier, and painful.

Swelling and other symptoms also evoked women’s anxiety about their future. Mrs. Louise, a 68-year-old African-American woman with over 10 years of lymphedema, related, “The mere thought that my arm can really become bigger and painful and I will not be able to stir food or put food into oven is really distressing and scaring.” Ms. Nancy, another African-American woman who worked as an administrative aide and had two years of lymphedema, poignantly added:

As I type each day seeing my hand swell up by the middle of the day and feeling the soreness soar up, I cannot stop worrying that someday I might no longer be able to use my arm and hand if I continue my job. I am worried about my future.

STARTSTART

Confronting the Unexpected

Women in this study did not consistently recall ever receiving lymphedema counseling and those who did remember counseling said that they were not advised about how lymphedema would affect their daily lives. Universally, participants experienced symptoms as unexpected and they described themselves as unprepared when encountering lymphedema-related symptoms. Mrs. Wendy, a Chinese woman, remarked, “I was not told about lymphedema before and I was not told about lymphedema after cancer treatment. When I started having swelling, I had no idea what it was because I never even heard about the word lymphedema.” Lack of preparation for lymphedema contributed to uncertainty and heightened distress among participants. Mrs. Karen, a white woman, speculated that clinicians may have withheld information about such symptoms because they did not want to scare women. She said, “I guess they do not want to scare us, but frankly, no one told me that these problems were going to be part of my life.” Even when several women were counseled and heard of the word lymphedema, they indicated that there was no discussion about how lymphedema might affect them and play out in their lives. For them, the word lymphedema was “just a TERM—a term that had never been well explained at that point.”

Not knowing what lymphedema was interfered with women’s ability to solicit support and assistance and this further intensified suffering and distress for the women. Some women revealed that neither surgeons nor physicians, nurses, or other health care professionals showed any understanding of lymphedema. This compounded the problem because it prolonged time to diagnosis, treatment, and eroded the sense of trust that women felt in their clinical providers, all exacerbating suffering. This is epitomized in the experience of Mrs. Barb, a 57-year-old white female high school teacher with seven years of lymphedema. Describing her fear, and frustration at the invalidation of her concerns, she recalled:

It was Christmas… I noticed that my arm was fire-red, hot, swollen and tight. From that point on, I really struggled with my arm. I was scared by the swelling of my arm. For two years, I would go to my surgeon, an elderly gentlemen and wonderful person…and I love him dearly…he would pat on my shoulder and say, “I feel so sorry for you.” That just didn’t help! I appreciated his sympathy, but at the same time his sympathy did not help my situation. I was quite frustrated. I heard about massage therapy. I had a little article that I shared with him, but he said, “I think, this massage is on the up… up… [out of reality]” I felt very frustrated. I had to switch to another doctor. AU: CAN OUT OF REALITY BE CHANGED TO “NOT REALISTIC”?

Even when women were aware of lymphedema, they did not imagine nor were they counseled to expect how symptoms might be experienced in the context of their daily lives. The women offered numerous examples, such as the inability to carry groceries, lift trays of food, vacuum the floor, fold laundry, clean the shower or bathtub, change fitted sheets, or wipe counters. The lack of preparation for these daily instrumental challenges intensified distress. Activities of daily living became sources of intense frustration and unwelcome, repetitive reminders of the cancer as when women found that “even brushing my teeth makes my arm fatigued” and “stirring food makes my arm so sore and painful.” As described previously, in the case of Mrs. Barb, distress was further compounded when women felt that clinicians did nothing but pity them and trivialize their efforts to address the lymphedema. Reflecting the same frustration, women described feelings of being misunderstood or accused of feigning or exaggerating their symptom experiences. Ms. Wong, a Chinese clothing factory worker whose job required her to constantly use her hand to sew, said her hand “[would] swell as a streamed bun and [be] very painful.” Describing her frustration, Ms. Wong conveyed that her boss failed to understand her lymphedema situation and this contributed to an abusive atmosphere at work:

Sometimes, my friends want to help me but my boss was very upset, yelling, “When your hand is burst, I hope I will not see you again.” As a single mother with two children under age 15, I cannot afford to lose my job so I just ignore whatever he yells.

Women noted how limitations were particularly distressing when they had an impact on their jobs. Mrs. Lin, a pathology laboratory technician at a large metropolitan cancer center, described her frustration at work with lymphedema:

Everyday, I have to use [a] vertex machine to vibrate more than 50 samples. I have to use both hands to hold each sample tube while the vertex machine vibrates each sample for five minutes. After holding more than 50 samples for about 250 minutes of vibration, the swelling was worse and the pain, soreness, and fatigue in my right [affected] arm and hand were unbearable. Besides, I have to push and pull heavy machines or objects in the lab. Vibration, overuse of my arm and hand, and lifting or pushing heavy objects are risks that I have to avoid to stop lymphedema from getting worse. However, because of the nature of my job, I have been exposed to such risks everyday. Although I have been going to physical therapy, the swelling, pain, soreness, and fatigue did not reduce. Each day my swelling and pain become worse and the symptoms are so intense. I am caught in this dilemma: my job makes my lymphedema worse but I need my job.”

Participants further expressed how limitations were acutely distressing when clothes were difficult to fit. Mrs. Dean, a white woman with eight years of lymphedema, exemplified the experience. “It’s very frustrating and distressful when time after time that you put on two different outfits and you had to take it off and to find another one to fit in [your arm].” Moreover, women offered numerous examples of distress when lymphedema-related symptoms interfered with their ability to care for children. They poignantly described being unable to lift a child from the bathtub, carry a child, or change diapers.

Losing Pre-Lymphedema Being

Living with ongoing discomfort symptoms and confronting unexpected situations carried additional meaning for how the women viewed themselves. The women felt that they lost “pre-lymphedema me.” In contrast with the “speedy and efficient” way they viewed themselves prior to lymphedema, women reported that they were no longer “the get-up-and-go person.” They were slowed down by being deprived of “the freedom of getting up and putting on clothes” because they had “to do massage, exercise, and put on the [compression] sleeve before getting dressed.” Echoing the views of all, Mrs. Donna, a 58-year-old white pre-school teacher, remarked, “Lymphedema has slowed me down. I can no longer be a get-up-and-go person because things with lymphedema cannot be done in a speedy way, like putting on the sunscreen, doing massage, exercising, putting on the [compression] sleeve and glove.”

In addition, women believed they were visibly marked by the lymphedema experience. They reported becoming persons “with a visible sign” of “the swollen arm,” “puffy hand,” “[compression] sleeves,” “wraps,” and “[compression] gloves.” This served both as a constant reminder for the women and as an unwanted signal they felt they projected to others. It said that they had been changed by the breast cancer experience. As Mrs. Kathy stated, “Lymphedema will never go away. It’s a constant reminder of breast cancer. So, you cannot really forget that you had cancer because you are reminded everyday.” Such a visible sign also elicited “feelings of embarrassment,” “less attractive,” “ugly,” and “not sexy.” Mrs. Liu, a 35-year-old Chinese woman remarked, “It’s kind of hard to be sexy. I have to dress with this big, ugly sleeve.” Women also felt that such a visible sign was also a constant reminder that “I am so different now because lymphedema is so physical and everybody can see. It’s a reminder every minute of the day that I have lymphedema.”

Women’s sense of loss of their pre-lymphedema being was also explicated by their feeling of “having a fashion deficit.” Women described that they had to “dress for lymphedema” rather than dress for themselves and according to their taste. They described being forced to wear long sleeves so as to cover their swollen arms or compression garments. For Ms. Jenny, a 56-year-old white business women, “having a fashion deficit” limited her from wearing normal “pretty little cute bras with thin straps” and wearing “bracelets and other charms” on affected hands. She reminisced about how she had previously viewed herself as “chic.”

Feeling Handicapped

Women described that lymphedema made them feel “handicapped,” “debilitated,” “bothersome,” “inconvenient,” and “limited.” Along with these perceptions, women felt a “loss of independence,” that they would never return to a pre-lymphedema independent state where they were self sufficient and not forced to rely on others. This experience was described in the contexts of home and work. At home, women noted that they reluctantly had to depend on their family members to “move furniture,” “shovel the garden,” “bring a bucket of water for the flowers,” or “lift and shake the large area rug.” At work, the women resented having to rely on coworkers to “pick up heavy boxes” or “move the tables.” Being “handicapped” and “debilitated” created tremendous daily limitations, unwelcome feelings of weakness and dependency, and distress at work for women whose jobs required repeated lifting and repetitive typing. This was wistfully portrayed in the words of Ms. Josephine, an African-American EKG technician whose job required her to lift patients quite often:

I am handicapped by lymphedema. I used to be a very independent person. With lymphedema, I cannot lift my patients just using my right [non-affected] arm…I have to ask people for help. Very often, people are very busy with their own work and I have to wait. It is really depressing to rely on others especially for women like me in the working field.

Mrs. Lin further elaborated this experience. Her laboratory job required the repetitive movement of her affected arm and hand as well as the need to hold her arm in “a fixed, steady position for extended periods of time.” At times, her arm was additionally subject to a significant vibratory stress. She noted, “I felt disabled because of lymphedema. Although I tried to use my left [non-affected] hand and arm as much as possible, a lot of my work in the lab needs both hands and arms.”

Discussion

This study had important limitations. The data reflect the experiences of 34 female breast cancer survivors with lymphedema living in the United States. Ensuring generalizability of the results for qualitative studies was not an aim. It cannot be claimed that the essence of the experiences drawn from these 34 women represents all breast cancer survivors’ experiences of lymphedema-related symptoms. Nonetheless, to our knowledge, this study was the first to explore breast cancer survivors’ experiences of lymphedema-related symptoms in their daily lives.

While the prevalence and occurrence of ongoing multiple symptoms in breast cancer survivors with lymphedema has been reported [3,5], women’s perceptions about and responses to lymphedema-related symptom experiences have not been described. Consistent with previous quantitative studies, participants in the study reported that they experienced multiple lymphedema-related symptoms each day. As they unexpectedly encountered lymphedema and sought to integrate the lymphedema experience into their lives, women confronted a myriad of unexpected challenges which, in their words, brought them a lot of distress and frustration. The term “distress” or “symptom distress” is usually used interchangeably to refer to emotional responses evoked by physical symptoms [20]. Upon an integrative literature synthesis, Goodell and Nail [20] concluded that the definitions of symptom distress are inconsistent and are usually assumed by researchers. Insufficient research on the nature of the concept of symptom distress calls for more research to explore the concept of symptom distress from the patient’s perspective [20,21]. In this study, participants, repeatedly and in vivid detail, portrayed how ongoing lymphedema-related symptoms not only escalated physical discomfort but also elicited “distress” and “frustration” in their daily lives. Findings of the study, from the participants’ perspective, support the concept of symptom distress as complex of emotional responses evoked by physical symptoms in the context of breast cancer survivors’ daily lives.

Researchers and scholars have recognized the multifactoral nature of symptom distress and have defined distress from physical symptoms as “a multifactorial unpleasant emotional experience of psychological (cognitive, behavioral, emotional), social, and/or spiritual nature” [22]. However, from the participants’ detailed description of lymphedema-related symptom experiences, we additionally noted temporal, situational, and attributive dimensions of distress elicited by their symptoms (Figure 1).

The lack of the preparation for ongoing symptoms and for the unexpected situations intensified the women’s emotional responses (distress) to the symptoms. For example, women felt frustrated and distressed when they expected symptoms to disappear with intensive lymphedema therapy and daily self-care but instead symptoms stayed as “perpetual discomfort.” Frustration and distress also arose when women confronted situations in which lymphedema-related symptoms unexpectedly led them to the new situation in which they had to change their previous lifestyles (such as “finding different clothes to fit the swollen arm”) or they had to rely on others in daily routines at work and home. The temporal (when symptoms linger forever) and situational (when symptoms lead to unexpected situations) dimensions of distress elicited by lymphedema-related symptoms are explicated through the description of the themes of “living with perpetual discomfort” and “confronting the unexpected.”

For the women, the ongoing symptoms and the emotional responses evoked by the symptoms were a reminder that they would never return to their pre-lymphedema being. They felt that they became persons who unwillingly projected “a visible sign” and had to “dress for lymphedema,” and they were no longer “get-up-and-go” people, a term which had once defined them. The themes of “losing pre-lymphedema being” and “feeling handicapped” showed that lymphedema-related symptoms could evoke emotional responses that changed the women’s perceived identities. This may indicate that distress from lymphedema-related symptoms may include an attributive dimension, that is, when symptoms elicit emotional responses powerful enough to change perceived personal identity.

It is important to note that severe distress was experienced when lymphedema-related symptoms interfered with women’s ability to accomplish tasks at work or when employers perceived the women’s “swollen arm” or “puffy hand” as “a visible sign of disability.” For the women, such a visible sign not only visually separated them from healthy employees but also made them feel like a vulnerable target for blame. Participants constantly worried about their job performance and security, worsening of lymphedema, and cancer recurrence, which contributed to their ongoing suffering. Previous studies [7,8,10] revealed that breast cancer survivors with lymphedema experienced multiple emotions including abandonment, loss, anger, sadness, and frustration owing to lack of information, health care providers’ lack of lymphedema knowledge and ineffective lymphedema treatment. In the women’s own words, this study reveals the multidimensional experiences of lymphedema-related symptom distress that breast cancer survivors face.

Although group comparisons were not the focus of the study, it should be noted that Chinese-American and African-American participants reported more occurrences and more severe lymphedema-related symptoms as compared with white participants. They suffered severe lymphedema-related symptoms from activities such as house cleaning and other laborious house chores. This may have been a function of socioeconomic status (some of the white participants could afford domestic help at home). Moreover, the majority of Chinese-American and African-American women in the study had jobs that entailed heavy lifting and constant use of the affected arms and hands. Their physically laborious jobs were the sources of financial income or were needed to maintain health insurance. These women not only suffered from the profound physical impact of lymphedema but also endured constant emotional distress created by their supervisors or bosses who had little knowledge or regard for their physical challenges. For the survivors, the experience of being not understood evoked feelings of helplessness and despair, highlighted in Mrs. Even’s remarks, “It’s time after time that you are reminded by your boss that you have something wrong with this arm, which puts you in a constant worry about your job security and makes you feel helpless.” Future studies should focus on the examining the impact of lymphedema-related symptom experiences on minority breast cancer survivors and developing interventions to better help this at-risk group of particularly vulnerable women.

In this study, participants wished they could relegate the experience of cancer and resulting lymphedema to the past. However, when they were reminded by symptoms, they could no longer block the conscious awareness that they had changed. The experiences of being reminded daily and constantly confronting unexpected situations combined to create distress. For the women, the reality was that cancer was far from over and lymphedema-related symptoms were a frequent and unwelcome set of reminders that could evoke intense distress and despair.

Conclusion

In industrialized nations, women diagnosed and treated for breast cancer are living longer than ever before, and with growing rates of detection, aging demographics, and advances in treatment, the number of women living with the after-effects of breast cancer treatment continues to rise precipitously [23]. Existing studies have examined the relationships between lymphedema and survivors’ quality of life [5,6]. Findings of our study provide new information and insights focusing on why lymphedema-related symptom experiences are particularly distressing to long-term breast cancer survivors. The study suggests that distress (emotional responses) evoked by lymphedema-related symptoms may encompass temporal, situational, and attributive dimensions. While symptom prevalence or occurrence and overall quality of life are important indicators for measuring the impact of lymphedema, they may not fully capture symptom distress embedded in the temporal, situational, and attributive dimensions among breast cancer survivors.

To decrease distress, it is vital that health care providers prepare women for the ways symptoms may play out in their lives. An effective way to prepare patients for late effects of cancer treatment is to provide on-time, ongoing, and accurate patient education. Recent studies show that patient education or provision of lymphedema information prior to or during cancer treatment has a significant effect on breast cancer survivors’ experiences of lymphedema-related symptoms, such as arm swelling, heaviness, impaired shoulder mobility, and serome formation [24,25]. During follow-up care, health care professionals need to discuss ways that symptoms can emerge and situations can occur following breast cancer treatment and lymphedema diagnosis. Open dialogue about living with lymphedema-related symptoms needs to be initiated during the ongoing care for breast cancer survivors.

In order to develop patient-informed treatment guidelines for breast cancer patients coping with lymphedema-related symptoms, it is vitally important to better understand women’s experiences in the context of their daily lives. Understanding that symptom distress encompasses temporal, situational, and attributive dimensions would help to develop more specific interventions to target each dimension. Prospective studies are needed to examine these dimensions of symptom distress and explore the relationship between symptom distress and psychosocial distress following breast cancer treatment.

Footnotes

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