Lymphedema Risk Reduction and Management

The Management of Lymphedema

Lymphedema management includes risk-reduction education and lymphedema treatment. Although cancer treatment-related lymphedema is the most recognized cause of nonfilarial lymphedema in developed countries, most of the management strategies described are also valid for individuals with primary lymphedema and associated disorders, such as phlebolymphedema and lipedema.

Educating At-Risk Individuals

Cancer survivors are a growing cohort—15.5 million Americans, as of January 2016. Survivorship presents a unique set of complex needs, including risk for developing lymphedema. While some survivors develop lymphedema as a late effect of treatment, limited empirical evidence prevents clinicians from predicting likeliness of onset in individuals at risk. Epidemiological reports of breast cancer-related lymphedema (BCRL) and cancer-related lower limb lymphedema vary among researchers, with higher rates noted when researchers combine patient self-report or utilize multiple strategies for measurement and lower rates when the sample is studied for less than 2 years. A systematic review suggests a 21% incidence of BCRL worldwide. Reporting of lymphedema following treatment for cancers other than breast varies from 4–75% for head and neck to 20–31% for gynecological and genitourinary. Factors that may increase risk for lymphedema following cancer treatment are identified in multiple studies, but data are inconclusive for absolute risk ( Fig. 10.1 ).

In contrast to the evidence for cancer-related secondary lymphedema, primary lymphedema remains an even further underdiagnosed, understudied, and undertreated disorder. Compelling work in genetics may one day improve predictability for lymphedema as a consequence of cancer treatment. While definitive criteria for lymphedema risk are lacking, medical professionals must educate patients at risk to allow timely access to care.

Early proponents of risk-reduction education urged health professionals to teach activity restrictions to limit potential triggers for lymphedema, basing recommendations on expert opinion and anecdotal evidence. Some past recommendations lack scientific rigor required for widespread adoption. Today, many advocate for teaching strategies to enable patients to make behavioral changes that minimize lymphatic burden. Some call for more rigorous science before broadly prescribing risk-reduction practices, especially in those with lesser risk, such as breast cancer survivors who have undergone sentinel lymph node biopsy.

Clinicians acknowledge the need for clinical trials to strengthen advice but assert that sound understanding of lymphatic physiology and pathophysiology of lymphedema provides the basis of current risk-reduction recommendations. Patients search for health information independently and may find inaccurate information. Ultimately, patients are better served in receiving direction from healthcare providers.

Knowledge Leads to Early Intervention and Best Practice

Contemporary lymphedema literature emphasizes the need for self-monitoring, early diagnosis, and access to specialized treatment. Educators teaching risk-reduction strategies have multiple aims:

• 1.

  Teach patients to understand personal risks and symptoms.

• 2.

  Make an appropriate response should onset occur.

• 3.

  Minimize stress on the lymph drainage system during typical activities of daily living (ADLs).

• 4.

  Resume ADLs mindfully and with confidence.

• 5.

  Engage in health-promoting activities ( Fig. 10.2 ).

  

Educational components of lymphedema risk-reduction include explanation of normal lymphatic anatomy and physiology, pathophysiology of lymphedema, signs and symptoms of lymphedema, signs and symptoms of infection, the need for physician diagnosis, and patient-specific personal risk factors ( Fig. 10.3 ). Initiation of services geared toward the prevention of the late effects of breast cancer treatments varies among practitioners in the multidisciplinary team of cancer care. Patients would benefit from improved consistency across disciplines and greater third-party reimbursement for preventative care.

Risk Reduction Is Important for Health-Related Quality of Life and Health-Promoting Behaviors

Research demonstrates that health-related quality of life (HR-QOL) is reduced in breast cancer survivors with lymphedema compared with breast cancer survivors who do not have lymphedema. Some studies find that complete decongestive therapy (CDT) improves HR-QOL and lack of knowledge around lymphedema leads to reduced HR-QOL. A milder stage of lymphedema leads to greater ease of treatment and long-term symptom management. For patients with and at risk for lymphedema, engagement in health-promoting activities can support improved HR-QOL. A growing body of evidence demonstrates exercise improves HR-QOL and may have a protective effect countering the development of BCRL.

However, fear may drive patient decision-making and lead to avoidance behaviors, such as limiting use of the affected arm during routine ADLs or avoiding physical exercise, possibly resulting in deconditioning and weight gain. Patients may implement inappropriate symptom management or ignore symptoms. If healthcare providers do not teach risk reduction, the patient will lack the ability to make informed decisions about lifestyle choices. Deconditioned muscle groups are more readily strained with the addition of exercise or strenuous ADLs, and research suggests that a sedentary lifestyle can contribute to lymphedema risk. The consequences of soft tissue strain may trigger lymphedema, further reinforcing avoidance behaviors and reducing quality of life ( Fig. 10.4 ).