Lymphedema is a daunting prospect for both POST BREAST CANCER. Part 2

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1 2.4 HOURS Continuing Education POST BREAST CANCER Lymphedema Risk-reduction and management strategies can help those facing this distressing and often poorly addressed condition. Part 2 of a two-part article. Part 2 OVERVIEW: As breast cancer survivors often say, lymphedema is more than just a swollen arm. A result of surgical or radiologic breast cancer treatment, it s an abnormal accumulation of lymph in the arm, shoulder, breast, or thoracic area that usually develops within three years of a breast cancer diagnosis but can occur much later. In Part 1 (July) the authors described the pathophysiology and diagnosis of lymphedema. In Part 2 they discuss current approaches to risk reduction, treatment and management of the condition, and implications for nurses. By Mei R. Fu, PhD, RN, ACNS-BC, Sheila H. Ridner, PhD, RN, ACNP, and Jane Armer, PhD, RN, FAAN Lymphedema is a daunting prospect for both those at risk for it and those living with it. As one study participant striving to manage her lymphedema said, I am scared to death that something is going to happen. I don t want my arm to blow up. 1 Post breast cancer lymphedema a sequela of surgical or radiologic treatment is characterized by an abnormal accumulation of lymph in the arm, shoulder, breast, or thoracic area. It causes discomfort and pain, impaired function, and emotional distress and usually develops within three years of a breast cancer diagnosis (but can occur much later); breast cancer survivors remain at risk for lymphedema throughout their lives. 34 AJN August 2009 Vol. 109, No. 8 ajnonline.com

2 Mei R. Fu. All rights reserved. Many survivors find it difficult to adhere to a daily regimen of risk reduction or disease management. Studies have found that breast cancer survivors with lymphedema have higher levels of anxiety and depression and more difficulty in relationships than those without lymphedema. 2-4 The financial burden is also significant; one recent study of claims data for working-age women during the two years after a breast cancer diagnosis found that those who developed lymphedema had medical costs ranging from about $14,900 to $23,200 higher than those who did not. 5 Yet lymphedema has received little attention, even from clinicians caring for breast cancer survivors. Indeed, participants in one study reported that coping with lymphedema was more distressing than coping with breast cancer in part because they felt abandoned by clinicians who had limited knowledge of the condition. 6 It s imperative that survivors risk of lymphedema be reduced and that those who develop it be helped to manage it. In Part 1 (July) we described the pathophysiology and diagnosis of lymphedema. This month we discuss risk reduction, treatment and management, and implications for nurses. RISK REDUCTION Approaches to reducing the risk of lymphedema include breast-conserving surgery (lumpectomy) with sentinel lymph node biopsy, targeted radiotherapy, and educational and behavioral interventions. ajn@wolterskluwer.com AJN August 2009 Vol. 109, No. 8 35

3 Table 1. Strategies for Reducing the Risk of and Managing Lymphedema in Breast Cancer Survivors Prevent infection Perform daily skin care, including keeping the affected area clean and dry and applying moisturizer. Treat scratches, punctures, abrasions, cuts, and insect bites by washing with soap and water, then applying a topical antibiotic. Inspect the affected area daily for changes in size, shape, texture, soreness, heaviness, tightness, and firmness. Inform a clinician immediately if redness, rash, pain, increased skin temperature, fever, or flu-like symptoms occur. Wear gloves during activities that could cause skin injury (such as gardening or cleaning). Use an electric rather than a blade razor to shave the axilla; don t cut cuticles. Prevent injury Avoid any injections in the affected area. Apply insect repellent. Apply sunscreen. Use caution when cooking to avoid splash or steam burns; use oven mitts. Prevent muscle strain Avoid using the affected arm to lift or carry heavy objects. Avoid overusing the affected arm. Wear a well-fitted compression garment during strenuous activities. Avoid vigorous and repetitive movements of the arm. Rest the affected arm if it feels tired or aches. Avoid restriction of the affected area Avoid having blood pressure measured on the affected arm. Wear a well-fitted bra. Choose a lightweight breast prosthesis. Wear loose-fitting jewelry and clothing. Avoid using bags with shoulder straps on the affected side. Avoid excessive heat Avoid prolonged exposure to heat (such as in hot tubs or saunas). Avoid immersing the affected arm in hot water (above 102 F). Promote lymph drainage Elevate the affected arm above the level of the heart for 45 minutes two or three times daily, or as advised. With the arm raised, open and close the hand 15 to 25 times, or as advised. Engage in regular, light aerobic exercise (such as walking or swimming) daily or several times weekly. Maintain optimal body weight. Elevate the affected arm or wear a well-fitted compression garment when traveling by air. American Cancer Society. Lymphedema: what every woman with breast cancer should know Cancer.asp; National Cancer Institute. Lymphedema (PDQ). General information about lymphedema [patient version]. National Institutes of Health cancertopics/pdq/supportivecare/lymphedema; National Lymphedema Network Medical Advisory Committee. Position statement of the National Lymphedema Network: lymphedema risk reduction practices. Oakland, CA; Reducing the risk of lymphedema from surgery. Surgical treatment for breast cancer has traditionally meant radical or modified radical mastectomy with axillary lymph node dissection (the removal of 10 to 30 nodes in order to limit and stage the disease and provide information useful for prognosis and treatment). To reduce the risk of lymphedema from surgical causes, some patients who are diagnosed with early-stage breast cancer (stages 0, 1, or 2; for a description of all stages, visit 109Hma) opt for a more conservative surgical approach. Most often this entails the removal of only the cancerous portion of the breast with sentinel lymph node biopsy (the removal of one or a few sentinel nodes those that first receive lymphatic drainage from a malignant tumor and are therefore the most likely sites for metastasis 7 ). Sentinel nodes are identified by injecting a trace substance (a radioisotope, a blue dye, or both) near the tumor and mapping its path through the lymphatic system. Sentinel node biopsy is less invasive than axillary node dissection. Recent studies suggest that the use of breast-conserving surgery with sentinel node biopsy may decrease the incidence of lymphedema But this approach is relatively new and requires a longer follow-up because lymphedema can first occur many years after treatment for breast cancer. 11 Further, when there s evidence of cancer in the lymph nodes, radical or modified radical mastectomy with axillary lymph node dissection remains the best treatment choice. Reducing the risk of lymphedema from radiotherapy. In conventional external-beam radiotherapy, small fractional doses are delivered over the course of several weeks until the total dosage has been reached. But this method is less than exact, and misses can occur. Recent innovative approaches include targeted intraoperative radiotherapy (referred to as TARGIT), in which a single high dose is delivered intraoperatively to the tumor bed using an applicator, 12, 13 and accelerated partial-breast irradiation, in which larger fractional doses are delivered over five days using a balloon catheter It s hoped that by targeting the tumor site directly and avoiding radiation scatter to the axilla, these newer methods will help reduce the risk of lymphedema, but whether that s the case is unknown. Research in this area is needed. Educational and behavioral interventions might reduce a patient s risk of developing lymphedema, recent research suggests. 17 As we discussed in the online-only portion of Part 1 ( AJN/A1), there is evidence that certain factors such as obesity (defined as a body mass index of 30 kg/m 2 or greater) make lymphedema more likely to occur or worsen ; other factors that can trigger or exacerbate lymphedema include prolonged heat exposure, infection, and injury to the affected area Although there is some evidence that air travel exacerbates it, 24 there s no consensus. 23 So it stands to reason that educating patients on how to reduce 36 AJN August 2009 Vol. 109, No. 8 ajnonline.com

4 their risk might lower the incidence and lessen the severity of lymphedema. In position papers and teaching materials, the American Cancer Society, the National Cancer Institute, the National Lymphedema Network, and the Oncology Nursing Society emphasize the importance of patient education (For a list of ways patients can help to prevent infection and injury, avoid muscle strain and heat exposure, and promote lymphatic drainage, see Table 1.) But often those at risk don t receive educational materials. 17, 29 And people can t practice behaviors they don t know about. We believe that individualized education, including pre- and posteducation testing and review during subsequent visits, would increase patients efforts at risk reduction. Well-designed studies of behavioral approaches to lymphedema risk reduction are needed. TREATMENT AND MANAGEMENT Lymphedema cannot be cured. Treatment is aimed at reducing edema and other symptoms and restoring function; management is directed toward controlling symptoms and avoiding exacerbation. Approaches include surgery, pharmacotherapy, low-level laser therapy, and complete decongestive physiotherapy. Surgery and pharmacotherapy. The effectiveness of both is limited and both carry risks. Surgical procedures categorized as either excisional (as in reduction surgery) or reconstructive (as in lymphangioplasty) are used in an effort to remove excess fluid or tissue in the affected area, enhance lymphatic function, or both; but these approaches have been Figure 1. Compression Bandaging A multilayer compression bandage is an essential component of comprehensive decongestive physiotherapy. The bandages, which are not elastic, prevent the flow of lymph back into the affected limb. A trained lymphedema therapist can instruct a patient in the proper application of the bandage. Photo Jane Armer. All rights reserved. 30, 31 only marginally effective. And complications may include a recurrence of swelling, poor wound healing, and infection. Therefore, surgery should be considered only when other treatments have failed and benefits have been weighed against risks. 30 Pharmacotherapy has included the use of coumarin (a benzopyrone), ostensibly for its proteolytic properties, and diuretics. But the use of these drugs has been controversial at best. Diuretics can increase interstitial protein concentrations, making inflammation and fibrosis more likely; coumarin has been found to be hepatotoxic and ineffective for treating 32, 33 lymphedema. Low-level laser therapy as a treatment for lymphedema may be of some benefit, but more research is needed. Treatment involves applying short pulses of red or near-infrared light to points in the axilla, with sessions occurring several times over a period of weeks. 34, 35 Although how the therapy works isn t ajn@wolterskluwer.com AJN August 2009 Vol. 109, No. 8 37

5 Figure 2. Night Compression A compression garment can be worn overnight during the maintenance phase of lymphedema management. The black Velcro jacket provides the appropriate pressure gradient comparable to that provided by multilayer compression; the pressure is greatest at the distal end of the arm and least at the proximal end, which encourages the flow of lymph back toward the trunk. Photo Mei R. Fu. All rights reserved. known, it s thought to improve lymph flow and encourage the growth of new lymph vessels. One study of women with post breast cancer lymphedema found that the therapy significantly reduced tissue hardness, the amount of extracellular fluid, and the volume of the affected arm in one-third of patients treated 34 ; another study found that it reduced arm circumference and pain, although the changes weren t significant. 35 Complete decongestive therapy (also called comprehensive decongestive therapy or complex physical therapy), which typically involves manual lymph drainage, multilayer compression bandaging, remedial exercise, meticulous skin care, elastic compression garments, and patient education, has become the standard of care for treating lymphedema. 33, 36 In phase 1 the focus is on reducing edema and relieving other symptoms; in phase 2 it s on maintaining gains and preventing exacerbations. 33 Initially, patients might receive daily or near-daily treatments for three to eight weeks. 33 Patients must commit to a lifelong daily regimen of prescribed exercises and skin-care procedures, as well as wrapping the affected area with bandages or wearing compression garments when appropriate (see Figures 1 and 2). Various factors can interfere with adherence: the regimen can be time consuming, physically difficult (especially if the affected arm is the dominant one), and costly (especially with regard to compression garments and bandages). For example, 1, 6, 37 although the cost of a bandage roll varies depending on its size, manufacturer, and vendor, and the number needed varies depending on the area to be wrapped, the cost typically ranges from $25 to $125 per bandaged area, and it s usually not covered by insurance. Ready-made compression sleeves generally run $60 to $100, and custom-made sleeves can cost as much as $300; most insurers only partially reimburse these costs. Even customized compression garments can be uncomfortable, unsightly, and laborious to put on, as one review noted, 30 and must be replaced every six months to ensure proper compression. All nurses can and should routinely assess breast cancer survivors for lymphedema and provide education on risk reduction. That said, for best results, patients with lymphedema should be treated by clinicians trained as lymphedema therapists. 33 Interested nurses, physicians, and other health care professionals can find a description in the position statement from the National Lymphedema Network (NLN), Training of Lymphedema Therapists 38 AJN August 2009 Vol. 109, No. 8 ajnonline.com

6 ( certification is obtained through the Lymphology Association of North America (www. clt-lana.org). Some symptoms, such as lymphedemaassociated psychological distress or fatigue, may require referrals to psychologists or physical conditioning experts. NURSING IMPLICATIONS Any nurse who knows a patient has had breast cancer should, at each visit, assess for swelling, local infection, and other signs of lymphedema. When such signs are present, the nurse should ask whether the patient has noticed symptoms, such as limited range of motion or skin changes. Nurses should also assess for adherence to the recommended risk-reduction or management regimen. Risk reduction. In two recent studies, patients with lymphedema ranked nurses among the most important actual providers of pretreatment education. 17, 29 Yet one study also found that when patients wanted more information on lymphedema, they didn t consider nurses to be primary resources. 29 It s essential that nurses know about lymphedema and be able to teach their patients about it. Lymphedema education should begin before the start of breast cancer treatment, so that patients and families are prepared to reduce its risk. But it s also important not to overwhelm patients and families with too much information at a time when they re still adjusting to a cancer diagnosis. (See Selected Resources for Patients and Providers.) However, pretreatment education decreases the chance that patients will obtain inaccurate, possibly harmful information from inadequate sources (such as poor-quality Web sites). 29 Pretreatment education should include a review of the lymphatic system and how its disruption causes lymphedema, a description of lymphedema s signs and symptoms, and discussion of risk-reduction strategies. After treatment, nurses should continue to review these topics at each follow-up visit and ask whether the patient is experiencing any signs and symptoms. Sensations such as tightness, heaviness, pain, burning, or numbness in the affected area that appears without swelling may indicate 38, 39 subclinical lymphedema. It s important that nurses periodically reassess breast cancer survivors for lymphedema by using a tool such as the 19-item Lymphedema and Breast Cancer Questionnaire (available by ing coauthor JA at armer@ missouri.edu). Nurses can also use one of the measurement methods described in Part 1 to monitor limb volume in a patient who develops lymphedema. Patients should also be referred to a lymphedema therapist as appropriate. Education should address skin care; for example, breast cancer survivors should avoid skin breaks when possible and should treat cuts, insect bites, Selected Resources for Patients and Providers The American Cancer Society offers Lymphedema: What Every Woman with Breast Cancer Should Know ( Breastcancer.org has a patient education section dedicated to arm lymphedema ( The Lymphology Association of North America (LANA) provides a searchable database of all LANA-certified lymphedema therapists ( The National Cancer Institute offers professional and lay versions of its trademark PDQ summaries of the latest published information on lymphedema ( The National Lymphedema Network offers various position papers ( and a searchable database of treatment centers, therapists, and equipment suppliers ( 14VVQp). The Oncology Nursing Society offers a Putting Evidence into Practice card set that addresses several topics, including lymphedema ( it s available for the cost of printing. Step Up, Speak Out ( offers resources, support, and advocacy for women and men with post breast cancer lymphedema. pinpricks, and burns immediately with a topical antibiotic. Because obesity is a known risk factor, survivors who are overweight or obese might benefit from weight-management counselling. Many survivors have concerns about whether exercise and air travel can trigger or worsen lymphedema and whether wearing compression garments lowers the risks. Research in these areas is either lacking or has yielded mixed findings. 23, 40 The NLN s Medical Advisory Committee has recently published position statements summarizing the literature and medical opinion on both issues (visit Guidance should always be tailored to the patient. Management. To be most effective, most management activities such as those involved in comprehensive decongestive therapy should be performed daily. Nurses can encourage survivors to do so by teaching them cognitive, psychological, and social coping skills, as well as by offering direct emotional support. 37 Cognitive coping involves understanding the need for making behavioral changes and identifying and overcoming barriers to making those changes. For example, in one study a woman realized that one of her hobbies, cross-stitching, exacerbated ajn@wolterskluwer.com AJN August 2009 Vol. 109, No. 8 39

7 her lymphedema; eventually she was able to make the decision to give it up. 1 Cognitive coping can be supported by education and discussion of the factors that worsen or improve lymphedema. Psychological coping involves setting and meeting management goals and continuing the daily regimen. One study identified four major intentions that survivors had as they learned to manage lymphedema: keeping in mind the consequences of not following the self-care regimen, preventing lymphedema from getting worse, preparing to make a lifetime commitment, and integrating self-care into daily life. 1 These intentions suggest that survivors must restructure their lives in order to manage lymphedema. For example, if a woman says she can t find the time for all of the self-care activities, a nurse might suggest ways to integrate them into her getting ready for the day and getting ready for bed routines. 1 Social coping involves finding and drawing on support from others. Nurses can refer patients and their families to resources such as community or online support groups, treatment and management programs available through a facility, and reputable Web sites. Social support helps to lessen the sense of isolation many people with lymphedema have reported. That feeling was vividly described by one survivor who said during an interview: You feel that you are on this little island by yourself and just struggling because there is no one else around who knows what [lymphedema] is. 37 If need be, nurses can organize and start a support group. A welldesigned support group can not only provide emotional support, it can serve as a place to practice certain skills, such as putting on a compression sleeve, applying a compression bandage, and performing manual lymph drainage. Group practice can counteract the sense of isolation and make these routines more enjoyable. Direct support. Nurses can support survivors by asking how they are living with the threat or the actuality of lymphedema. For example, the nurse might ask, Are you worried that you could develop lymphedema? Has anyone talked with you about things you can do to help reduce your risk? Nurses might ask patients who have lymphedema, Are you having any problems with swelling? How are you coping with that? Has anyone talked with you about ways to reduce swelling or keep it from getting worse? and Are there any other problems you d like to talk about? If all nurses who care for breast cancer survivors regardless of setting routinely encouraged such discussion, it would ease the distress so many survivors report. For more than 53 additional continuing nursing education articles related to the topic of cancer, go to Mei R. Fu is an assistant professor at the New York University College of Nursing in New York City. Sheila H. Ridner is an assistant professor at the Vanderbilt University School of Nursing in Nashville, TN. Jane Armer is a professor at the Sinclair School of Nursing, University of Missouri Columbia, and director of nursing research at the Ellis Fischel Cancer Center. Contact author: Mei R. Fu, mf67@nyu.edu. The authors of this article have no significant ties, financial or otherwise, to any company that might have an interest in the publication of this educational activity. REFERENCES 1. Fu MR. Breast cancer survivors intentions of managing lymphedema. Cancer Nurs 2005;28(6): Pyszel A, et al. Disability, psychological distress and quality of life in breast cancer survivors with arm lymphedema. Lymphology 2006;39(4): Ridner SH. Quality of life and a symptom cluster associated with breast cancer treatment related lymphedema. Support Care Cancer 2005;13(11): Tobin MB, et al. The psychological morbidity of breast cancer related arm swelling. Psychological morbidity of lymphedema. 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8 20. Mak SS, et al. Predictors of lymphedema in patients with breast cancer undergoing axillary lymph node dissection in Hong Kong. Nurs Res 2008;57(6): Soran A, et al. Breast cancer related lymphedema what are the significant predictors and how they affect the severity of lymphedema? Breast J 2006;12(6): Clark B, et al. Incidence and risk of arm oedema following treatment for breast cancer: a three-year follow-up study. QJM 2005;98(5): Nielsen I, et al. Breast cancer-related lymphoedema risk reduction advice: a challenge for health professionals. Cancer Treat Rev 2008;34(7): Casley-Smith JR, Casley-Smith JR. Lymphedema initiated by aircraft flights. Aviat Space Environ Med 1996;67(1): American Cancer Society. Lymphedema: what every woman with breast cancer should know org/docroot/mit/content/mit_7_2x_lymphedema_and_ Breast_Cancer.asp. 26. National Cancer Institute. Lymphedema (PDQ). General information about lymphedema [patient version]. 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Lymphology 2003;36(2): Bicego D, et al. Exercise for women with or at risk for breast cancer related lymphedema. Phys Ther 2006;86(10): HOURS Continuing Education EARN CE CREDIT ONLINE Go to and receive a certificate within minutes. GENERAL PURPOSE: To provide registered professional nurses with information on current approaches to reducing the risk of and to the treatment and management of post breast cancer lymphedema. LEARNING OBJECTIVES: After reading this article and taking the test on the next page, you will be able to list the various treatment options for lymphedema. summarize the strategies that can reduce one s risk of developing lymphedema. plan appropriate interventions for patients who have lymphedema. TEST INSTRUCTIONS To take the test online, go to our secure Web site at To use the form provided in this issue, record your answers in the test answer section of the CE enrollment form between pages 40 and 41. Each question has only one correct answer. You may make copies of the form. complete the registration information and course evaluation. Mail the completed enrollment form and registration fee of $21.95 to Lippincott Williams and Wilkins CE Group, 2710 Yorktowne Blvd., Brick, NJ 08723, by August 31, You will receive your certificate in four to six weeks. For faster service, include a fax number and we will fax your certificate within two business days of receiving your enrollment form. You will receive your CE certificate of earned contact hours and an answer key to review your results. There is no minimum passing grade. DISCOUNTS and CUSTOMER SERVICE Send two or more tests in any nursing journal published by Lippincott Williams and Wilkins (LWW) together, and deduct $0.95 from the price of each test. We also offer CE accounts for hospitals and other health care facilities online at com. Call (800) for details. 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