The Cost of NOT doing MLD in Phase 2 Lymphoedema Management.

Active vs Passive Care: Limitations in the Two Phase Paradigm

Lymphoedema management is traditionally divided into two stages.

Image By Ian Taylo

Phase 1 is an intensive, therapist-led reduction stage lasting several days or weeks. Specialised Manual Lymphatic Drainage (MLD) and multilayer bandaging are applied frequently with the clear goal of reducing limb volume and stabilising swelling. This is an active, structured intervention, tailored to address individual clinical features and presentation.

Phase 2 shifts to maintenance by the person-affected and generally involves daily activities of self-care. Multilayer bandaging is replaced with compression garments, and a simplified self-lymphatic massage routine may be prescribed. Skincare and exercise continue in a one-size fits all routine where the primary goal becomes preventing progression rather than achieving further change.

This model subtly reframes the roles: the therapist delivers active treatment in Phase 1, while the client assumes a largely self-managed, stabilising role in Phase 2. Maintenance becomes synonymous with “holding steady.”

Partially Ai generated image

Phase 1 is essential for achieving the best possible starting point, but lymphoedema is a chronic, progressive condition. Stability is not guaranteed simply because the limb has been reduced once.

The long-term outcome depends on what follows, and removing specialised MLD from this phase carries measurable physical and quality-of-life costs. Decades of clinical observation suggests that specialist MLD during the maintenance phase has multiple benefits.

One study which investigated the absence of MLD during Phase 2 in breast cancer-related lymphedema (BCRL) found that when subjects stopped receiving MLD, they experienced a significant worsening of both arm volume measurements and arm heaviness [Da Cuña-Carrera et al., 2024].

The cost of passive maintenance is therefore cumulative. The absence of ongoing MLD is associated not only with gradual increases in limb volume, but with declines in comfort, tissue pliability, and health-related quality of life (QOL). Small increases in volume can precede tissue fibrosis. Subclinical congestion can contribute to heaviness, fatigue, and vulnerability to infection. Patients may remain “within garment range” while function and wellbeing quietly deteriorate.

Continuing periodic, specialised MLD in Phase 2 reframes maintenance as active management rather than passive containment. It supports tissue health, symptom control, and encourages continued self-care. The issue is not whether garments and exercise are important; they remain foundational. The question is whether we accept a model that withdraws skilled lymphatic intervention at the very stage where long-term adaptation is being determined.

Meaningful Measures: Prioritising Quality of Life Over Numbers

For decades, the focus of lymphedema research and clinical care has been on objective measures like limb circumference and volume, reinforcing the active vs passive paradigm.

Image By Jennifer Burk

While measuring volume change is an important clinical indicator, it is generally less meaningful in the maintenance phase, where personalised factors affecting daily quality of life should be the primary outcome measure [Müller et al., 2018].

Yet measures of success in Phase 2 are frequently still centred around limb volume. This myopic view undervalues the lived experience, and ignores client-centred indicators such as pain, functional capacity, and psychosocial indicators.

Research among women after breast cancer shows they experience a range of physical and psychological symptoms that have a detrimental effect on their health related QOL, an outcome increasingly recognised as one of the main goals in cancer survivorship care [Invernizzi et al., 2022].

Participants in qualitative studies with long-standing lymphedema often dismiss the utility of measuring circumference, stating they "can tell the leg is swollen just by looking," prioritising their subjective sense of swelling and well-being over a clinical 'number' [Guan et al., 2025].

Measuring the benefit of MLD in the lived experience must also move beyond clinical endpoints like volume, and address meaningful subjective symptoms that reflect more personal and functional goals.

The Research Gap: How 'Numbers' Hinder Innovation

The emphasis on easily quantifiable metrics like volume has also stalled innovation and led to a reliance on "empiric rather than precision medicine approaches". [Invernizzi et al., 2022].

If research funding and study design are dictated by the ability to detect statistically significant changes in limb volume - a measure that does not necessarily deliver any functionally useful data - then treatments that primarily improve subjective well-being may be undervalued or understudied.

This struggle is evident in systematic reviews which generally consider subjective measures as secondary outcomes, if they consider them at all.

Studies on smaller groups or with QOL as the primary measure are dismissed due to the inability to achieve statistical significance. This ignores the value of clinical relevance and hinders the pursuit of qualitative research on MLD’s non-volume-related benefits [Müller et al., 2018].

In an age where overall quality of life is gaining ground as a a primary outcome in health interventions, studies that assess the cost-effectiveness of various interventions in the maintenance phase of lymphoedema management are warranted [Invernizzi et al., 2022].

The Active Role of MLD vs. Passive use of Static Compression

Compression, while essential for containment, is a passive measure.

Compression sleeves help in "preventing further swelling" but are "not able to reduce tissue thickness in later stages of BCRL". [Invernizzi et al., 2022].

The Da Cuña-Carrera study reinforces this, showing that when MLD sessions were discontinued, arm volume and heaviness worsened, despite the fact that all participants continued to use their compression sleeves daily [Da Cuña-Carrera et al., 2024].

This strongly suggests that static compression alone is insufficient to maintain the results achieved in Phase 1, and the active stimulation of MLD is necessary to manage fluid accumulation and symptoms like heaviness.

Self-lymphatic drainage can go a long way to replacing the MLD therapist if it can be performed frequently in an individually prescribed protocol. However, many people are left to research self-massage advice from social media and other unverified sources. Many of these describe a one-size fits all approach and fail to emphasise the motivation, time and effort that will be needed in many cases.

The Need for Continuous Support and Sustainable Care

The lymphedema journey is a marathon, not a sprint, and long-term success is deeply tied to continuous support and self-management.

People frequently face multidimensional challenges, including informational gaps, functional impairment, and difficulties in psychosocial adaptation.

The ability to perform complex self-management at home is often hindered by a lack of proper guidance and supervision, with many people reporting "Incomplete follow-up mechanisms by medical staff" [Guan et al., 2025].

The emotional and psychological toll can be immense, requiring self-concept behavioral support to promote better decision-making but and strong external support, [Guan et al., 2025] either from family members and carers or via local community services.

The continuity of care provided by a properly trained MLD therapist in Phase 2 offers invaluable reassurance, motivation, and professional supervision that translates to better treatment adherence and, ultimately, better outcomes.

Leg Lymphoedema: A Distinct Challenge

While the need for MLD is universal, fundamental differences in leg lymphedema impose greater demands than those for unilateral BCRL arm lymphoedema.

The main differences are in the cause and complexity of arm vs leg lymphoedema, and the additional gravitational forces acting on the lower body. However most research is on BCRL of the arm, and may offer little to assist those living with leg lymphoedema.

Arm lymphedema is predominantly caused by lymphatic damage incurred during breast cancer, and which are generally known, ie how many axillary lymph nodes were removed.

Whereas leg lymphedema is more frequently related to complex factors including a variety of cancers, obesity and chronic venous insufficiency [Müller et al., 2018]. This mixed pathology can present a more complex clinical picture in leg lymphoedema. This is exacerbated by significantly greater hydrostatic pressure and gravitational forces exerted in the lower limb throughout the day, potentially making it more challenging to manage fluid and prevent tissue fibrosis.

Forward-Looking Solutions.

The Da Cuña-Carrera study directly concluded that, given the worsening of volume and heaviness observed in the control group, "it would be advisable to carry out this type of therapy as part of the maintenance treatment for lymphedema in breast cancer" Da Cuña-Carrera et al., 2024].

For lymphedema care to be truly sustainable, regular MLD sessions must be re-established as an advisable and necessary component of Phase 2 maintenance.

Once the need for ongoing professionally delivered MLD is accepted, there may still be geographical and financial barriers, compounded by a lack of suitably qualified practitioners in most areas. In these cases the need for and individualised self-drainage routine becomes essential, and the use of telehealth and online mentoring can play a crucial role here in filling the gaps left by the absence of MLD.

Conclusions:

For many, the true price of stopping MLD is not immediately visible on a tape measure. It is reflected in lived experience. Measures of clinical relevance must be given a higher level of acceptance as evidence of success in lymphoedema management. Ultimately, the maintenance phase must be carried out by the person affected, and that can and should include regular MLD treatment and support from a therapist.

In chronic disease management, what we stop doing can matter as much as what we start.

References:

1. Da Cuña-Carrera, I., Soto-González, M., Abalo-Núñez, R., & Lantarón-Caeiro, E. M. (2024). Is the Absence of Manual Lymphatic Drainage-Based Treatment in Lymphedema after Breast Cancer Harmful? A Randomized Crossover Study. Journal of Clinical Medicine, 13(2), 402. https://www.mdpi.com/2077-0383/13/2/402

2. Müller, M., Klingberg, K., Wertli, M. M., & Carreira, H. (2018). Manual lymphatic drainage and quality of life in patients with lymphoedema and mixed oedema: a systematic review of randomised controlled trials. Quality of Life Research, 27(6), 1403-1414. https://doi.org/10.1007/s11136-018-1796-5

3. Invernizzi, M., De Sire, A., Venetis, K., Cigna, E., Carda, S., Borg, M., . . . Fusco, N. (2022). Quality of life interventions in breast cancer survivors: state of the art in targeted rehabilitation strategies. Anti-cancer agents in Medicinal Chemistry (formerly current Medicinal Chemistry-Anti-Cancer Agents), 22(4), 801-810. doi:10.2174/1871520621666210609095602 https://air.unimi.it/bitstream/2434/856382/2/Review%20HRQoL%20in%20BC.pdf

4. Guan, Y., Ju, H., Xu, L., Wan, Z., Ge, L., & Fang, Y. (2025). A qualitative study on the post-discharge self-management experiences and needs of patients with secondary lymphedema. Medicine, 104(33), e43557. doi:10.1097/md.0000000000043557 https://journals.lww.com/md-journal/fulltext/2025/08150/a_qualitative_study_on_the_post_discharge.129.aspx