Breast Cancer Survivors' Intentions of Managing Lymphedema

Mei R. Fu, PhD, RN, CNS


Cancer Nurs. 2005;28(6):446-457. 

In This Article


Lymphedema exerts intense and multidimensional impact on breast cancer survivors' daily lives. Many breast cancer survivors with lymphedema have experienced various degrees of physical or functional impairment that impede satisfaction in their daily lives.[11,13] In addition to the swelling, breast cancer survivors with lymphedema also have symptoms that cause severe discomfort. Such symptoms include pain, burning sensation, tightness, heaviness, and numbness in the affected hand, wrist, elbow, arm, shoulder, and thoracic regions.[7,16,17,18] The distress from such symptoms impacts breast cancer survivors' quality of life.[19] The heaviness and enlargement of the affected arm prevent breast cancer survivors from completing household chores, being able to sleep during the night, and accomplishing occupational roles.[10,12,20] Altered body image from lymphedema lies in that the visible appearance of the disfigured arm cannot be hidden. Finding clothes that fit the enlarged arm remains a distress and challenge for breast cancer survivors with lymphedema.[11,21] The visibility of imperfect body image causes extensive psychological distress, social anxiety, poor self-esteem, and disrupted interpersonal and family relationships in breast cancer survivors.[13]

Managing lymphedema has increased breast cancer survivors' risk of developing psychosocial distress. The presence of mental disorders, such as anxiety and depression, has been reported in both qualitative and quantitative studies.[10,12,13,22] Passik et al[23] reported that about 10% of women with post-breast cancer lymphedema at a major career rehabilitation center were referred to the psychiatric service. Coping with lymphedema also leads to serious psychosocial distress that directly influences breast cancer survivors' quality of life.[2] Financial costs have been a severe burden for breast cancer survivors with lymphedema.[10] The US health system typically does not support protracted treatment regimes. Insurance and Medicare usually do not provide full coverage for the costs of lymphedema treatment.

Lymphedema treatment usually focuses on the use of different therapies to decrease or maintain the swelling.A[6] variety of lymphedema treatments are available, including physical therapy, surgery, and pharmacological therapy.[14,24,25,26] Surgical treatment consists of debulking through surgery in which excess fluid and tissue in the limb are removed and functional surgery in which efforts to enhance lymphatic function are undertaken.[26] Both types of surgical procedure have potential complications, such as recurrence of swelling, poor wound healing, and infection, thus surgical treatment should only be considered when other treatments fail.[8] Pharmacological therapy, specifically the use of coumarin (a benzopyrone) or diuretics, were proved ineffective for treating lymphedema.[24,27]

Physical therapy, such as limb elevation, massage, exercise, and external compression, is the mainstream therapy for treating lymphedema.[20,27,28] The scheduling of time-consuming and costly physical therapy is also distressing for breast cancer survivors with lymphedema. Usually, treatment programs require about 4 to 6 weeks of intensive treatment and require breast cancer survivors to make a commitment to continue daily exercise, skin care, performing self-massage, and wearing compression garments.[9,15,29] Patient compliance has been identified as the most important factor in treating lymphedema.[15,29]

Lymphedema management focuses on activities and strategies that breast cancer survivors undertake for daily lymphedema care.[6] The goal for lymphedema management is to decrease the swelling, to relieve distress from related symptoms, and to prevent acute exacerbations and infections. Often breast cancer survivors find managing lymphedema requires adoption of new health behaviors and changes in their lifestyle. Such changes include avoiding risk factors leading to severe lymphedema, using external compression (sleeve, wrap, bandage, or pump), elevating the affected limb, performing remedial exercise and self-lymph massage, performing daily skin care, and modifying diet.[6,9,20,28] Such behavioral changes in lifestyle requires breast cancer survivors to initiate and maintain the behaviors leading to effective lymphedema management.

The descriptive phenomenological framework for the study was based on certain assumptions grounded in phenomenological philosophy and knowledge obtained from lymphedema literature review. Intentions in this study were viewed as breast cancer survivors' consciousness of actions toward lymphedema management. The assumptions based on phenomenological philosophy are: (a) reality is experiential;[30,31] the reality of managing lymphedema emerges from the experience in which a breast cancer survivor with lymphedema acts upon and interacts with her lymphedema condition; (b) the experience is intentional;[30,31] the intentionality of experience enables a breast cancer survivor to intentionally undertake actions linked to her perceptions about her life-world of lymphedema. Findings about the life-world of breast cancer survivors with lymphedema will be reported elsewhere.


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