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IN BRIEF
Breast cancer survivors face a lifetime risk of developing breast cancer-related lymphedema, a chronic and debilitating condition requiring lifelong symptom management. Despite the critical role of self-management after intensive therapy, adherence rates to self-management remain suboptimal, highlighting gaps in patient support and education tailored to individual needs. This article explores the barriers patients encounter during the self-management phase and examines strategies to enhance adherence. By addressing these challenges, we can empower survivors to manage their symptoms effectively, provide ongoing support throughout survivorship, and improve their quality of life.
Breast cancer-related lymphedema results in arm and/or breast swelling and requires lifelong symptom management. It is a common condition that affects approximately 1 in 5 patients following breast cancer treatment.1 With an estimated 2,001,140 new breast cancer cases in the United States in 2024,2 about 21.4% of survivors are expected to develop long-term lymphedema,3 though some studies suggest rates as high as 40%.4 These data translate to over 400,000 women being at risk of developing lymphedema annually. Breast cancer-related lymphedema is characterized by the accumulation of protein-rich fluid in the affected limb, resulting from impaired lymphatic drainage associated with breast cancer treatments, mainly with axillary lymph node dissection, sentinel lymph node biopsy, and radiation therapy.5 It commonly occurs shortly after treatment but may also develop years later, putting breast cancer survivors at lifetime risk.6 It is a progressive condition that, without proper intervention, can advance to later stages. Predisposing factors that can contribute to an individual developing lymphedema include:7
Complete decongestive therapy (CDT), the gold standard lymphedema treatment, aims to restore the affected limb to normal or near-normal size by optimizing healthy lymphatic pathways. CDT involves 2 phases: the intensive (phase 1) and the self-management phase (phase 2).8 In the intensive phase, patients receive daily treatments in the clinic by certified lymphedema therapists. In the self-management phase, patients engage in ongoing practices such as skin care, self-manual lymphatic drainage, risk reduction strategies, the use of compression garments, and a focus on exercise, nutrition, and weight management to maintain the gains made during the intensive phase.9
In the literature, self-management is defined as an individual’s ability to manage their chronic condition while incorporating these self-management behaviors into daily life to optimize quality of life.10 For breast cancer-related lymphedema, self-management includes using compression garments daily, performing self-manual lymphatic drainage, maintaining healthy skin, monitoring for injuries or skin changes, and adopting a healthy lifestyle through regular exercise and weight management.9
Breast cancer-related lymphedema is a lifelong condition that requires ongoing management to prevent symptom progression and maintain quality of life. Therefore, successful engagement in selfmanagement is crucial for mitigating the chronic nature of the disease and minimizing its impact. However, despite its importance, adherence to self-management remains suboptimal, with adherence rates ranging from 28% to 69%.10 Challenges in adherence arise from several factors, including lack of education, limited access to resources, financial burden, psychosocial stressors, and difficulties incorporating self-care routines into daily life. This article examines the barriers to successful self-management of breast cancer-related lymphedema and explores strategies to improve adherence and overall outcomes.
Barrier 1. Lack of Patient Education
One of the main barriers identified in the literature is a lack of education regarding lymphedema treatment and risk reduction. Many women impacted by breast cancer and breast cancer-related lymphedema have insufficient knowledge and understanding about lymphedema; therefore, they lack the skills to self-manage their condition.10 Health care professionals are critical in educating patients about lymphedema prevention and self-management strategies. However, most patients do not receive this education until symptoms have already developed.6 Furthermore, even when education is provided, it is often incomplete, with many patients unaware that lymphedema is a chronic condition requiring lifelong management.6,10 The lack of lymphedema knowledge extends beyond patients to health care professionals themselves.10 Many patients learn about breast cancer-related lymphedema from a certified lymphedema therapist only after symptoms arise.11 With the limited availability of certified lymphedema therapists and long wait times at most facilities, the absence of timely education from the oncology team at diagnosis significantly hinders early detection and the ability to manage symptoms successfully and independently. However, education alone may not be sufficient; patients’ perception about their self-efficacy in symptom management should also be considered, as it plays an important role in adherence to managing symptoms. Therefore, education should also include a motivational component to motivate patients to participate in self-management behaviors.6
Barrier 2. Treatment Burden
Self-management of lymphedema involves multiple components, including wearing compression garments during the day, utilizing bandaging or night garments while sleeping, practicing meticulous skin care, engaging in regular exercise, maintaining a healthy diet and weight, and monitoring for signs of infection. Therefore, selfmanagement of lymphedema can be vexing and time-consuming. Many patients face competing responsibilities, such as fulfilling personal and professional roles, managing other chronic health conditions, or lacking adequate social or familial support. These challenges can significantly impact their ability to allocate the time and energy required for consistent lymphedema self-management.10
Barrier 3. Psychosocial Factors
Deficits in social support can significantly impact adherence to self-management practices. Limited assistance with self-care tasks, insufficient support from family and friends, transportation difficulties, and childcare responsibilities often create barriers to following recommended management strategies.12 Additionally, some patients may avoid seeking help because they are concerned about burdening their families.10 Although self-management can effectively control lymphedema symptoms, it does not offer a cure. This reality—coupled with unmet expectations and the chronic nature of the condition—can contribute to emotional distress. The persistent demands of lifelong care may lead to feelings of hopelessness and reduced motivation to engage in selfmanagement behaviors. Additionally, concerns about the appearance of bandages or the impact of compression garments on clothing choices can further affect adherence to self-management practices.12
Barrier 4. Financial Burden
The cost of compression garments can create a significant financial burden, particularly for individuals without insurance or those whose insurance does not cover these essential items.12 As a result, many patients are unable to afford replacement garments, a common challenge among women with breast cancer-related lymphedema.10 Furthermore, barriers such as geographic distance from lymphedema therapy services and the high costs associated with lymphedema management can further restrict access to essential medical care and resources.10
Barrier 5. Other Comorbidities
Physical limitations, such as pain or coexisting medical conditions, can hinder patients’ ability to perform self-management techniques.12 For instance, individuals with shoulder injuries or pain may struggle to apply compression garments, while those with severe arthritis may find self-manual lymphatic drainage challenging. Patients who live alone and lack caregiver support are particularly vulnerable, as they may be unable to carry out necessary self-management techniques, potentially leading to lymphedema progression over time.
Solutions and Future Direction
Breast cancer-related lymphedema is a chronic, progressive condition requiring lifelong self-management; however, many patients face challenges engaging in self-management techniques due to insufficient knowledge, skills, and support. Addressing these challenges requires a comprehensive, multidisciplinary approach. Since lymphedema is incurable and treatment focuses on lifelong symptom management, equipping patients with education and resources is essential for promoting successful self-management behaviors and outcomes.
Lymphedema education often begins only after symptoms manifest, typically during visits to certified lymphedema therapists. To improve outcomes, education should start at the time of cancer diagnosis and be delivered in both verbal and written formats. However, given the emotional burden associated with a cancer diagnosis, patients may struggle to retain information initially. Therefore, future strategies should emphasize ongoing education, periodic risk assessments, and regular baseline and follow-up arm measurements to facilitate early detection and intervention.
Systemic interventions are also needed to alleviate financial burdens and enhance resource accessibility, ensuring equitable care for all individuals. Health care professionals are instrumental in promoting self-management. Expanding educational initiatives for all providers involved in cancer care is essential to support the proactive management of breast cancer-related lymphedema. Developing standardized protocols for follow-up care could further enhance adherence, ensure continuity in patient support, and endorse a prospective surveillance model for monitoring.
Despite receiving education, some patients may remain disengaged from self-management practices. This highlights the need for supportive interventions, including peer support programs and structured follow-up care. Peer support, while prevalent among breast cancer survivors, is notably absent for individuals with breast cancer-related lymphedema. Future efforts should prioritize establishing breast cancer-related lymphedema-specific support groups to foster adherence, emotional resilience, and shared learning. Regular follow-ups should also assess patient adherence and adapt care plans to address barriers.
Addressing systemic challenges, such as the financial burden and limited access to medical resources, is another critical area for future action. Policymakers should prioritize initiatives that reduce the economic strain on patients, such as subsidizing compression garments and therapy costs, to make lymphedema care more accessible. These efforts could significantly improve equity in breast cancer-related lymphedema management and patient outcomes.
Berfin Mahmut, PT, DPT, CLT-LANA, OnCS, is a board-certified oncologic physical therapist, certified lymphedema therapist, and cancer exercise specialist with more than 5 years of experience in the field. Dr. Mahmut currently practices at Mount Sinai Health System in New York City.
References
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