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Catching signs of lymphedema early can be beneficial for long-term management of the condition and infection prevention. Prospective surveillance can help.

Lymphedema, a condition characterized by swelling in the body caused by problems with the lymphatic system, is an often-misunderstood, under-recognized disease that frequently goes undiagnosed until it is too late to be reversed.

Determining the prevalence of lymphedema is difficult, because no specific global or American studies on the disease have been completed, according to the Lymphatic Education & Research Network.

According to estimates, as many as 250 million people worldwide have lymphedema, with about 10 million of those affected residing in the U.S. The U.S. figure exceeds the combined total of people with HIV, Parkinson’s, multiple sclerosis, muscular dystrophy, and ALS.

One notable subset of the condition is breast cancer-related lymphedema (BCRL), which may result from procedures that have removed lymph nodes, radiation to lymph nodes, and certain types of chemotherapy.

Traditionally, clinicians have waited until lymphedema symptoms begin to develop before intervening, which has meant that lymphedema had gone undiagnosed until the condition reached a later stage and couldn’t be reversed.

However, that is changing today with prospective surveillance models which may represent the key to effective early intervention of lymphedema. These models, which are based on the concept of obtaining a pre-treatment baseline followed by regular surveillance to detect sub-clinical lymphedema, aid clinicians in identifying lymphedema before the appearance or onset of symptom-related sensations.

Preventing Infections Associated With Lymphedema

For patients at-risk of lymphedema, such as those whose lymph nodes have been removed, skin care is critical to infection prevention. It starts with obvious measures such as good hand hygiene, but also includes using proper pH cleansers and moisturizers and avoiding sunburn and other damage to the skin.

If a patient experiences a break in the skin, they should immediately wash the area and subsequently monitor for signs of infection, which may include pain, redness, and warmth. Patients may additionally develop systemic symptoms, such as fever or flu-like issues.

If any of these symptoms develop, patients should seek immediate attention from their clinicians. It is important for patients to understand that the lymphatic system does move fluid, but it also mediates the immune response throughout the body. Other healthy habits for your lymphatic system include staying hydrated, exercising, and managing stress.

There is a common misconception among patients that lymphedema is an inert, benign swelling, but, unfortunately, it is much more than that. Stagnant lymphatic flow leads to an impaired immune response, which can lead to cellulitis, a potentially serious bacterial skin infection.

Many clinicians lack a full understanding of the connection between lymphedema and cellulitis. Patients who experience recurring symptoms of cellulitis require a proactive approach to lymphedema management that reduces the likelihood of additional infections that can further harm the lymphatic system.

To prevent lymphedema-related infections, the best way forward is to encourage patients to participate in prospective surveillance, which gives clinicians the opportunity to detect and treat subclinical symptoms that may lead to severe chronic lymphedema. It is important to note that the possibility of prospective surveillance should be a shared decision reached by patients and their clinicians, with experienced, knowledgeable clinicians guiding patients through the process to arrive at the best decisions based on their own unique situations.

Professionals should discuss with patients the possibility of developing lymphedema or lymphedema-related infections, and that regular surveillance can be an essential component of lymphedema prevention.

Identifying and Preventing BRCL

Clinicians have traditionally diagnosed chronic BRCL by noting visible and apparent symptoms. A thorough patient history and attentive listening to patients’ concerns regarding arm sensation and function should be the first step in enabling early intervention and possible prevention. This should be complemented by objective measurements of arm swelling, with volume measurements serving as the traditional foundation for detecting lymphedema.

Common methods clinicians use to assess arm volume and quantify the development of early BRCL – include circumferential tape measurements, volume displacement tanks, and Perometry. These methods look at a percentage of volume change from a baseline measurement and between both arms. However, the disease can also be diagnosed before symptoms occur via a non-invasive test called bioimpedance spectroscopy or BIS, which can detect an increase of extracellular fluid inside a patient’s arm.

BIS technology, referenced in national clinical practice guidelines, can detect small increases that would otherwise be imperceptible. BIS can also measure body composition such as total body water, extracellular, and intracellular fluid volumes and let clinicians know about skeletal muscle mass and fat mass that are important for cancer survivorship.

After early lymphedema has been identified in a patient, clinicians may prescribe compression garments to be worn for a short period of time. They may also recommend customized exercise programs that can be delivered through digital platforms or in-person by trained therapists to preserve limb mobility and function while also reducing the risk of disease progression.

While there is no cure for lymphedema, it can be prevented when detected early. With prospective surveillance programs, clinicians and patients can detect lymphedema at the subclinical stage before noticeable swelling, enabling early intervention to stop progression to chronic lymphedema and associated infections.