Insights from a Canada-wide Study to Inform Breast Cancer-Related Lymphedema Clinical Practice Guidelines
Individuals living with or at risk of breast cancer-related lymphedema (BCRL) face common challenges and often share similar priorities in their care. Yet, their perspectives are rarely represented in the clinical practice guidelines, which intend to standardize and guide their care.
To address this gap, we conducted a Canada-wide survey to understand the experiences, questions, and care priorities of these individuals and to ensure that future clinical recommendations consider the perspectives of those living with or at risk of lymphedema.
This study is part of the ongoing update to the Canadian Clinical Practice Guideline for BCRL. We conducted a national online survey, followed by three online focus group sessions in both English and French.
A total of 137 individuals from across the country participated in the survey, with the majority being individuals living with BCRL. In the survey, we asked participants to share their most important questions about lymphedema at the various stages of treatment that follow a breast cancer diagnosis, and to identify their concerns and barriers to care. In the focus group sessions, we shared the survey findings with the participants and, through discussion, gained further understanding of their responses and perspectives.
What did individuals with and at risk of BCRL want to know?
Six key questions consistently emerged among survey respondents, regardless of province or location of residence.
1) What is my individual risk for BCRL?
Survey respondents wanted more information about their risk for lymphedema—a personalized risk assessment that considers both treatment-related and individual factors, and how these different factors alone, or in combination, may affect risk. They felt that by understanding their personal risk, they would be able to make better decisions early in their cancer care.
2) How can I reduce my chances of developing BCRL?
Survey respondents shared that they were often unsure what they could do to reduce their chances of developing BCRL. They commented that there was conflicting advice regarding common procedures, such as blood draws, injections and exercises, which caused uncertainty and confusion. They also wanted to understand where lymphedema might first develop (i.e. arm, chest wall, or breast), and asked for information on when to consider wearing a compression garment, or how early exercise might help. Participants also shared that they were open to trying different approaches to reduce their risk, such as starting treatment early, wearing a compression garment, staying active, and learning ways to support their lymphatic system.
3) Do I have lymphedema?
Survey respondents shared their concerns over recognizing early signs of BCRL. Many said they did not know what symptoms to look for, and some assumed the swelling or discomfort was due to something else, such as carpal tunnel or tendinitis. They identified the need for information about the early signs of BCRL, advice on when to seek medical care, and whether it is possible to diagnose or treat BCRL before visible swelling starts.
4) What are the best treatment options for BCRL?
Survey respondents expressed a strong need for evidence-based information and reliable resources about lymphedema treatment options. Many felt frustrated by the mixed messages they received from both online resources and healthcare providers. They wanted to know what treatments are available, how effective they are (e.g., what to expect), and whether any new or advanced therapies exist.
5) How can I best self-manage my lymphedema over the longer term?
Survey respondents acknowledged that self-management is central to living with BCRL; however, they shared that they need more support to do that confidently. They expressed a need for help in recognizing symptoms, monitoring changes and flare-ups, and managing the condition on a day-to-day basis. They also expressed a strong desire for practical tools and hands-on training.
6) How should my lymphedema be monitored?
Survey respondents identified the lack of a structured, long-term follow-up plan for lymphedema. Many shared that there were no early detection or monitoring programs, no regular check-ins, and no clear guidance on what to do if symptoms worsened. They also noted that ongoing support was limited, leaving them to manage the condition primarily on their own.
Barriers and facilitators to lymphedema care
Focus group participants identified five key themes that highlight opportunities to improve lymphedema care:
• Empowering patients. Participants strongly supported the need to be treated as partners in their care.
• Supporting self-management. Participants valued information, and learning practical skills to prevent, monitor, and
manage symptoms. “I think it’s self-management before the lymphedema even shows up.”
• Creating care and surveillance plan. Participants highlighted the need for programs that support early detection and provide a clear roadmap for care.
• Promoting provider awareness. Participants identified the need for healthcare providers to have better knowledge about BCRL—knowledge that would help avoid delays in diagnosis and treatment. “…making sure the medical team has the knowledge to pass that on to people so again, let them know where they can go, when they’re diagnosed, and what kind of treatments they have that they can follow, and the long-term treatment.”
• Ensuring equitable access. Participants shared their frustration about the limited availability of lymphedema services, especially in rural areas and for those without financial support.
The path forward
The perspectives of individuals living with or at risk of BCRL highlight actionable priorities for improving care. Participants emphasized the need for patient empowerment, timely diagnosis, consistent follow-up, better-informed healthcare providers, and equitable access to services, regardless of geographical location of residence. These insights underscore the importance of updating clinical guidelines to reflect the lived experiences of those most affected. The findings will directly inform patient-centred recommendations and guide the development of practical, evidence-based tools to support individuals with and at risk of BCRL and their healthcare providers.
Mona Al Onazi PT, MSc, PhD candidate, Faculty of Rehabilitation Medicine, University of Alberta, Edmonton, AB. Joanna Parkinson MSc, Cancer Care Program, Nova Scotia Health Authority, Halifax, NS. Diane Martin Patient representative, Guideline Working Group Advisor, Airdrie, AB. Margaret McNeely PT, PhD, Faculty of Rehabilitation Medicine, University of Alberta, Edmonton, AB.
This article originally appeared in Pathways Volume 14 #4 Fall 2025. Pathways is a publication of the Canadian Lymphedema Framework. Reprinted with permission.
Photo: Dissolve
