Breast Cancer Survivors' Intentions of Managing Lymphedema

Mei R. Fu, PhD, RN, CNS


Cancer Nurs. 2005;28(6):446-457. 

In This Article


The study was the first study that systematically described the breast cancer survivors' intentions to manage lymphedema. Intentions were viewed as breast cancer survivors' consciousness of actions toward lymphedema management. The bracketed key ideas are relevant to the intentions concerning breast cancer survivors' experience of managing lymphedema. Scholars and clinicians have postulated lymphedema management as a set of specific treatments.[14,28,37] In contrast, findings of the study showed that the women only considered having lymphedema treatment as one of the actions to achieve the intention of keeping control of lymphedema. In addition to having lymphedema treatment as needed, the women also took other actions to keep control of lymphedema such as wearing compression sleeves and gloves, applying wraps, using a pump, performing self-massage, performing arm exercise, cleansing their affected arms and hands, applying lotions on their affected arms and hands, elevating their affected arms, sleeping on the nonaffected side, and adhering to a low-sodium diet. The intentions described in the study reflected a broader spectrum of the experience more relevant to the reality of the women's daily routine for their lymphedema care. Rather than just having lymphedema treatment, the women initiated strategies to manage lymphedema by keeping in mind the consequences of not taking care of lymphedema and preventing lymphedema from getting worse. In addition to lymphedema treatment, the women actually changed their lives to manage lymphedema by getting ready to live with lymphedema and integrating the care of lymphedema into their daily lives.

Healthcare professionals and researchers have considered managing lymphedema distressing and demanding.[8,15,37] Carter stated, "managing lymphedema was more distressing to some women than coping with the initial diagnosis and treatment of breast cancer."[10 (p879)] Findings of the study showed that the distress of managing lymphedema came from multiple aspects of the women's experience of lymphedema. Most women in the study had the experience of being distressed, frustrated, and discouraged because of their inability to wrap their arms, difficulty in finding clothes that fit their enlarged arms, and the stares and questions from the public. However, "being distressed" was not an intention for the women to structure their lives to manage lymphedema, rather it reflected their life-world context from which emerged their intentions to "make the changes in their lives feasible," "to prevent lymphedema from getting worse," and to "find a way to face the curious public." Instead of passively accepting what they were told to do, the women in the study actively initiated strategies to make the changes of their lives feasible by carrying out those actions that they believed "effective," "less distressing," and "less time-energy consuming. " To resolve the distress from finding clothes that fit their arms, the women actively initiated the strategies to keep in mind the consequence and to prevent lymphedema from getting worse so that they could keep control of the swelling and be able to find clothes that fit their arms. Again, instead of passively reacting to the public, the women tried to find a way to face the curious public by making their sleeves less visible, educating the public, and smiling back or giving a simple answer.

Comparing the bracketed key idea that managing lymphedema requires high-degree compliance,[15,29] findings of the study revealed the women's perspective regarding lymphedema management. For the women, managing lymphedema was broader than their compliance with the treatment or their adherence to the prescribed actions. Instead of passively following exactly what they were told to do, the women actively and creatively structured their lives to integrate the care of lymphedema into their daily lives. The women did not consider that selectively carrying out prescribed actions for their lymphedema care as their noncompliance with treatment but as a strategy of "making the changes in their lives feasible" so that they could incorporate what worked for them and what they wanted to do into their daily lives. Findings from the study offer an insightful alternative to thecompliance approach to lymphedema management. In practice and research, instead of assessing the degree of breast cancer survivors' compliance with treatment offered, it may be more appropriate to assess the presence or absence of breast cancer survivors' intentions of how they structure their lives to manage lymphedema.

"Counting blessings" has been recognized as one of the strategies for cancer patients to cope with their chronic illness.[21,39] Similarly, the women in the current study also used "counting blessings" to help them to accept lymphedema. However, the contents of the blessings were different. The cancer patients counted their blessing by "being thankful that the [cancer] diagnosis came after their children were grown rather than when the children were more dependent" and by feeling lucky to be alive.[39] (p1541) The women in this study recognized different kinds of blessings related to their lymphedema management, such as feeling fortunate that they were able to keep their lymphedema under control, and feeling thankful that their lymphedema had not limited them as it might have done. It is apparent that the contents of blessings are important factors to differentiate the blessings of breast cancer survivors with lymphedema from that of cancer patients without lymphedema.

Having a positive attitude has been recognized as one of the important factors to help patients to cope with cancer.[40,41] Similarly, the women in the study perceived that "having a positive attitude" helped them to get ready to live with lymphedema. Wilkes et al[41 (p412)] found that positive attitude for the patients who were currently treated for different cancers meant to "be optimistic for the present day and taken control." However, for the women in this study, "having a positive attitude" meant to have an optimistic view, "I can deal with lymphedema. And it can be part of my daily routine just like brushing my teeth." Furthermore, for the women in this study, having a positive attitude also meant that "I don't dwell on lymphedema. I just accept it and take care of it." It is also apparent that the contents of a positive attitude are important to differentiate the specific contents of the breast cancer survivors with lymphedema from that of other cancer patients without lymphedema.

The majority of the women in the study had a strong faith in God. Flannelly et al[42] found that it was common for cancer patients to spontaneously mention that personal religion was important to them in dealing with cancer. Similar to this finding, the women in the study also spontaneously talked about the positive impact of their personal religious beliefs on their lymphedema management. The importance of spirituality or religious belief has been recognized as one of the strategies for cancer patients to accept their life-threatening illness.[43] Similarly, in this study, keeping a spiritual faith in God was another strategy that helped the women "accept lymphedema without questioning."

Scholars have reported the beneficial impact of social support on breast cancer patients' coping abilities from the moment of diagnosis until death.[44,45] A support group is usually considered a source of social support from peers that provides appraisal support to enhance individual's self-esteem.[46] Although only 3 women attended support groups, the women reported tremendous beneficial impact of support groups on their lymphedema experience. The study revealed that support groups not only helped the women to "have a sense of being related" and resolve their sense of "being singled out," but also provided the women with strength to accept lymphedema and carry out daily lymphedema care through peer interactions.

It is apparent that significant differences exist between the bracketed key ideas and the intentions. The key bracketed ideas reflect the perspective of scholars and clinicians. In contrast, the intentions reflected the breast cancer survivors' perspective and exemplified their initiating strategies to structure their experience of managing lymphedema through intentions, perceptions, and actions.


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