Understanding Lymphedema: Causes, Symptoms, and Prognosis

by Amanda N Rosso MS OTR, CLT, RYT-500

Overview

Lymphedema is a chronic condition that occurs when lymphatic fluid builds up in the body’s tissues, resulting in persistent swelling—most commonly in the arms or legs. However, it can also affect areas such as the chest wall, abdomen, genitals, and face.

At the core of the lymphatic system are lymph nodes, which act as filters, helping remove waste, bacteria, and excess fluid. When the flow of lymph fluid is disrupted—whether by disease, trauma, or medical treatment—it can lead to lymphatic congestion and tissue swelling, known as lymphedema.

This article provides a compassionate introduction to the causes, signs, and long-term outlook of lymphedema and how early understanding can support better care and quality of life.

What Causes Lymphedema?

Lymphedema can develop for several reasons, and its onset may be primary (inherited or congenital) or secondary (acquired due to other medical conditions).

In many cases, lymphedema is a side effect of cancer or cancer treatment. For example:

• Tumors may grow large enough to block lymphatic vessels, preventing fluid from draining properly.

• Surgical removal of lymph nodes, particularly during treatment for breast, pelvic, or gynecologic cancers, can impair the lymph system’s function.

• Radiation therapy may damage lymphatic vessels or surrounding tissues, further limiting drainage.

When these pathways are compromised, lymph fluid accumulates, leading to visible and often uncomfortable swelling in the affected area.

Signs and Symptoms

Lymphedema often develops gradually, and early symptoms may seem mild or intermittent. Common signs include:

• A feeling of heaviness or tightness in the arm, leg, or affected area

• Swelling that may start subtly and increase over time

• Skin changes, including a tingling sensation or tightness

• Discomfort, limited mobility, or aching in the swollen limb

• Recurrent infections or hardening of the skin (fibrosis) in later stages

Prompt recognition and intervention can prevent symptoms from worsening.

Prognosis and Long-Term Outlook

The course of lymphedema depends on whether the condition is primary or secondary, how early it is diagnosed, and how well it is managed.

In many individuals with early-stage lymphedema, symptoms can stabilize with proper care and may not significantly progress. However, chronic lymphedema—particularly when untreated—can lead to more serious complications, including:

• Recurrent infections such as cellulitis or lymphangitis

• Deep vein thrombosis (DVT)

• Skin changes and scarring

• Functional limitations affecting daily activities

• Emotional distress or body image concerns

In rare and severe cases, individuals with long-standing, chronic lymphedema may develop lymphangiosarcoma, a highly aggressive and life-threatening cancer. Symptoms of this rare condition include:

• Reddish-purple patches, nodules, or lesions on the skin

• Satellite tumors forming around the original site

• Rapid progression and poor survival outcomes (5-year survival rate <10%)

Other rare cancers reported in areas of chronic lymphedema include Kaposi sarcoma, squamous cell carcinoma, B-cell lymphoma, and malignant fibrous histiocytoma.

Reflections on Lymphedema Care

Lymphedema is not just a matter of swelling—it can profoundly impact a person’s mobility, self-care, mental health, and overall quality of life.

While there is currently no cure, early intervention and ongoing management can dramatically improve outcomes. Treatment options may include:

• Therapeutic skin care to prevent infections

• Compression therapy (sleeves, garments, bandaging)

• Exercise and movement therapy to stimulate lymph flow

• Surgical interventions in advanced or resistant cases

• Patient education and lifestyle strategies

As an occupational therapist and certified lymphedema therapist, I emphasize the importance of empowering individuals with knowledge, tools, and personalized care strategies. With the right support, many people with lymphedema can lead active, independent lives.

References

• Centers for Disease Control and Prevention. (n.d.). Lymphedema. Retrieved from: https://www.cdc.gov/cancer/survivors/patients/lymphedema.htm

Schwartz, R.A., & Kapila, R. (2021, March 24). Lymphedema. Medscape. Retrieved from: https://emedicine.medscape.com/article/1087313-overview