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OVERVIEW
Lymphedema, which can be a debilitating sequela to breast cancer treatment, is characterized by an abnormal accumulation of lymph in the arm, shoulder, breast, or thoracic area. It may appear gradually or suddenly, and although it usually develops within three years of a breast cancer diagnosis, it can arise much later; survivors remain at lifetime risk. The condition can cause physical discomfort and pain, impaired function, and emotional distress. It's imperative that survivors' risk of lymphedema be reduced and that those who develop it receive help to manage it. Part 1 of this two-part article describes post-breast cancer lymphedema and discusses its diagnosis and measurement. Part 2 (next month) will discuss risk reduction, treatment, and implications for nurses.
It's been called "one of the most dreaded sequelae" of breast cancer treatment.1 Said one breast cancer survivor: "Lymphedema is a constant reminder of my cancer. You cannot really forget that you have had cancer because you are reminded every day."2 Another said: "It's something you have to deal with physically and you have to deal with mentally. You know, lymphedema will never go away."3
 | Figure. Mei R. Fu. All rights reserved. |
Post-breast cancer lymphedema is characterized by an abnormal accumulation of lymph in the interstitial spaces, leading to persistent swelling in the affected arm, shoulder, neck, breast, or thoracic region, or any combination of these. It usually results from axillary node dissection but sometimes from sentinel node biopsy, radiotherapy, lumpectomy, or other trauma to the region. (Primary lymphedema is a hereditary condition; secondary lymphedema can result from trauma to the lymph system, as occurs during breast cancer treatment.) Many of the 2.4 million breast cancer survivors in the United States4 are living with lymphedema. One recent, large prospective study found that 42% of breast cancer survivors developed lymphedema within five years of treatment; the authors also noted that other recent prospective studies have reported three-year incidence rates of 15% to 54%.5 (Estimates of its incidence and prevalence vary widely according to the type of treatment for breast cancer, the diagnostic definition of lymphedema used, and the study's duration of follow-up.6) For an overview of the normal lymphatic system and the pathophysiology of lymphedema, go to http://links.lww.com/AJN/A1 .
Lymphedema profoundly affects the quality of survivors' lives. Those who develop it have reported physical discomfort and pain, functional impairment at home and on the job, poor self-image, reduced self-esteem, interrupted relationships, and financial burden.1, 7, 8 Advances in breast cancer treatment have made survival more likely, making it even more imperative that survivors' risk be reduced and that those who develop it be helped to manage it. Although studies indicate that lymphedema usually develops within three years of breast cancer diagnosis,5 it can arise much later; all survivors are at lifetime risk. There is no cure, but management can often keep the condition from worsening.
THE IMPACT OF LYMPHEDEMA
Often, the most visible manifestation of post-breast cancer lymphedema is swelling in the affected areas (usually the arm and hand but occasionally the breast or trunk) on the treated side. Lymphedema is accompanied by distressing symptoms such as pain; fatigue; decreased range of motion; skin changes; and sensations of tightness, heaviness, burning, or numbness in the affected areas. It has also been associated with fibrosis, cellulitis, lymphangitis, and other complications.1, 9 Indeed, Shih and colleagues found that survivors with lymphedema were twice as likely to develop cellulitis or lymphangitis as those without it.1
Lymphedema can impede one's ability to perform chores, fulfill tasks at work, and enjoy hobbies. One study found that survivors with lymphedema in their arm had difficulty performing many household tasks such as vacuuming or grocery shopping, both because of swelling and pain and because care recommendations include reducing repetitive motion and lifting with the affected arm.10 Lymphedema can also interfere with jobs that involve heavy lifting, gripping, holding, repetitive movement, or fine motor dexterity.2 Some find they must give up certain leisure activities such as gardening, sewing, and sports that involve strenuous upper body effort (such as golf or tennis) because these activities aggravate their symptoms.3
And there can be serious emotional and psychosocial effects. Studies have found that breast cancer survivors with arm lymphedema tend to suffer more psychological distress and have more difficulty coping than do those without this complication.8, 11 One study of survivors with lymphedema found that worries about job performance and security created "daily emotional distress" for many.3 The disfigurement of the affected arm or hand, as well as the need for compression garments, can cause social anxiety and fear of stigmatization.2, 3 And there is evidence that lymphedema imposes an economic burden. Shih and colleagues found that breast cancer survivors with lymphedema had significantly higher health care costs than did those without it.1 They also spent more days annually either hospitalized or visiting physicians' offices, which could adversely affect employment.
Despite the substantial impact lymphedema has on the lives of those who develop it, many providers seem unaware of the condition. Recent studies indicate that many breast cancer survivors don't receive adequate education either on their risk of developing lymphedema or on ways to reduce that risk.12, 13 This has undoubtedly impeded the development of effective risk-reduction interventions and of lymphedema management.
DIAGNOSIS AND MEASUREMENT
Several factors make diagnosing post-breast cancer lymphedema clinically challenging: the fact that there are no universally recognized diagnostic criteria, clinicians' failure to properly evaluate its symptoms, and the presence of coexisting conditions. First, it's important to rule out other conditions that might cause similar symptoms; these include cancer recurrence, deep-vein thrombosis, chronic venous insufficiency, diabetes, hypertension, heart disease, heart failure, kidney disease, and liver disease. Then diagnosis of lymphedema can be achieved through objective measurement and subjective symptoms.
Quantification. Of the various approaches available, no single measurement has gained prominence; this makes quantifying lymphedema difficult. The most widely used methods—water displacement, circumferential limb measurement, and infrared perometry—involve measuring the volume or circumference (or both) of the affected arm. Bioelectrical impedance analysis is emerging as a possible alternative to these methods.
For diagnostic purposes measurements are compared, either of the affected limb and the unaffected limb or of the affected limb at baseline and again at a later time. Lymphedema is often defined as a 2-cm or greater difference in limb girth, a 200-mL or greater difference in limb volume, or a 10% or greater difference in limb volume.14 There is currently no method for quantifying lymphedema in the breast, shoulder, and thoracic regions.
Water displacement, considered the gold standard for limb volume measurement, is known to be a sensitive and accurate measure in the laboratory setting, but it is seldom used in clinical settings because it's "cumbersome and messy."14 Patients submerge the affected arm in a container filled with water; the displaced water flows into another container and is weighed (see Figure 1). This method doesn't provide data about localization of the edema or the shape of the extremity,15 and it's contraindicated in patients with open skin lesions.14 Patients may find it difficult to hold the position long enough for the displaced water to drain completely into the overflow container.
 | Figure 1. Lymphedema Measurement: Water Displacement A patient's arm being assessed for edema using the water displacement method. Photo © Jane Armer. All rights reserved. |
Circumferential limb measurement (also called tape measurement) involves measuring the arm at several points—the hand, proximal to the metacarpals; the wrist; and then every 4 cm from the wrist to the axilla (see Figure 2).16 A flexible, nonelastic, paper tape measure should be used to ensure consistent tension over soft tissue and bony prominences. Although this method is easy to perform, it has limited inter- and intrarater reliability.14
 | Figure 2. Lymphedema Measurement: Circumferential Limb Measurement A research nurse measures the circumference of a patient's arm at several points from hand to axilla. Photo © Jane Armer. All rights reserved. |
Infrared perometry (also called optoelectronic volumetry) works in much the same manner as computed tomography but uses infrared light instead of X-rays.17 The volume and shape of the limb can be measured and volume changes calculated in seconds (see Figure 3). One study compared the accuracy of sequential circumferential measurement and infrared perometry in evaluating limb volume in women being treated for breast cancer.14 The researchers determined that perometry was as reliable as or better than sequential circumferential measurements for discerning limb volume changes over time.
 | Figure 3. Lymphedema Measurement: Infrared Perometry A research assistant (foreground) and a research nurse (rear) demonstrate the use of an infrared perometer. Photo © Jane Armer. All rights reserved. |
In bioelectrical impedance analysis, a small, low-frequency electrical current is passed through the body and resistance to that current is measured; different bodily components offer different levels of resistance, which allows for a calculation of fluid volume within a structure. This technology was first used by nutritionists for analyzing body composition. It has since been refined so that resistance of just extracellular fluid can be detected and its volume estimated.18, 19 This method has been used outside the United States for several years for the early detection of lymphedema and the monitoring of results of lymphatic massage in clinical settings.18 In this country it was used only in research studies until 2007, when the Food and Drug Administration approved one such device, the Imp XCA, for use in the clinical assessment of unilateral lymphedema of the arm.19, 20 Measurement takes less than five minutes and results are immediate. The device should not be used in people with pacemakers or implantable defibrillators. Further research is needed to establish its reliability and sensitivity.
Subjective symptoms can include feelings of swelling, tightness, heaviness, pain, burning, or numbness in the affected arm, shoulder girdle, or thoracic region and limited mobility in the affected hand, wrist, elbow, and shoulder. Such symptoms might indicate subclinical lymphedema, in which no signs are evident.9 Their presence warrants instituting early interventions to treat lymphedema; their periodic reassessment can also serve to indicate the effectiveness of such treatment.21, 22 The diagnostic importance of such subjective symptoms cannot be overstated, at least until standardized objective measures capable of early detection can be established.
The Lymphedema and Breast Cancer Questionnaire (LBCQ), a 19-item self-administered or structured-interview tool, can be used to assess such symptoms.23 The LBCQ has been shown to have a high degree of test-retest reliability and validity.2, 23 The tool was developed by one of us (JA) and can be obtained by contacting the authors.
LYMPHEDEMA ONSET AND STAGING
Onset may be gradual or sudden, and may occur early (within three years of breast-cancer diagnosis) or late (more than three years after diagnosis)24; initial onset has been known to occur as long as 30 years after diagnosis.16 It's still not fully understood why some patients develop lymphedema and others don't, even when the type and extent of surgery and the dosage and duration of radiotherapy are similar.
With gradual onset, observable swelling is often absent at first, although patients may report sensations of tightness and heaviness in affected areas. With sudden onset, swelling develops rapidly, usually within 24 hours of a triggering event. Common triggers may include air travel, infection, or injuries such as cuts, insect bites, pinpricks, or burns.24-26 In cases involving infection (especially cellulitis) or injury, the patient usually experiences sudden swelling with redness, an elevated white blood cell count, elevated temperature, or a combination of these.27, 28 Usually, immediate administration of oral or IV antibiotics clears the infection, and elevation of the limb helps to reduce the swelling. People who experience such infections are at higher risk for future infections.
A four-stage system is used to classify lymphedema in terms of skin condition and degree of swelling.9Table 1 presents detailed criteria for each of the four stages. Within each stage, it may be possible to further assess severity based on the difference in limb volume—either between affected and unaffected limbs or the same limb over time—as follows: mild (less than 20% increase), moderate (a 20% to 40% increase), or severe (greater than 40% increase).9
 | Table 1. Stages of Lymphedema |
For more than 52 additional continuing nursing education articles related to the topic of cancer, go to http://www.nursingcenter.com/cc.
REFERENCES
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