Many cancer survivors leave the treatment table triumphant, but for millions, the aftermath is a hidden yet life-changing side-effect: lymphoedema. This chronic and incurable disorder arises from damage to the lymphatic system, causing swelling in parts of the body.
Yet it affects millions of people around the world, yet it remains underdiagnosed, underresearched, and underfunded. Here, we bring light to this often-overlooked condition, its impact, and the fight that continues to make a difference in care and awareness.
Understanding Lymphoedema and Its Causes
Lymphoedema is a lifelong disease in which the lymphatic system cannot discharge lymph fluid correctly, causing edema, pain, and diminished mobility. The lymphatic system, an important component of the body’s immune and hemodynamic systems, controls fluid homeostasis, waste degradation, and infection protection. If this system fails, fluid collects, most often in the arms, legs, or elsewhere in the body, and causes considerable pain and disfigurement.
Who Is Affected?
While anyone can get lymphoedema, cancer patients have increased risk. Lymphoedema risk is raised by treatment such as surgery or radiotherapy to lymph nodes which damage lymph nodes. For instance:
- Up to 20% of breast cancer survivors develop lymphoedema.
- 90% of head and neck cancers correlate with the disease.
- Prostate cancer treatments result in lymphoedema in 2–29% of patients.
But cancer isn’t the only culprit. Can also be due to the etiologies such as genetic infection, obesity, and injury. Primary lymphoedema is the condition by which some people have a defective lymphatic system, whereas secondary lymphoedema develops due to extrinsic factors such as disease or injury.
The Hidden Costs of Lymphoedema – The Cancer Side-Effect
Physical and Emotional Toll
For patients, lymphoedema isn’t just swelling—it’s a lifelong challenge. Pain, heaviness, and decreased mobility may affect activities of daily living and cause emotional distress. Isolation, frustration, and depression have been reported by patients as a consequence of awareness and support deficits.
Matt Hazledine, founder of Lymphoedema United, told us, “There are some survivors who find the lymphoedema more unacceptable than the cancer itself. It’s a daily reminder of their past, staring at them every morning.“
Economic Strain
Managing lymphoedema comes with significant costs. The costs of compression garments, physical therapy, and hospital visits accrue rapidly. Lymphoedema patients in the United States consume an average of $8,172 during each hospital stay. Indirect costs such as time wasted can add up to $3,325–$5,545 per year. Patients of lower socioeconomic status are generally hardest hit, with limited access to care exacerbating their difficulties.
Healthcare systems also bear the burden. In England, lymphoedema complications cost the NHS £178 million annually, much of which stems from preventable cellulitis infections—a common complication of untreated lymphoedema.
Barriers to Treatment
Lymphoedema, though cocommonis still one of the most poorly understood and argued pathologies in healthcare. A survey in the US revealed that medical students receive less than 25 minutes of education on the lymphatic system during their training. Consequently, many doctors lack the knowledge to diagnose or treat the condition effectively.
In the UK, only five doctors can receive lymphoedema care at two centres and patients need to travel a large distance to get help. Insurance coverage for lymphoedema treatments is restricted in the United States, such that many patients have no access to the treatment that they so desperately need.
Raising Awareness and Improving Care
Breaking the Silence
Advocates and patients continue to fight hardest to help lymphoedema step out of the dark. Organizations such as Lymphoedema United, the Lymphatic Education Research Network, and Ninjas Fighting Lymphedema Foundation offer information, support, and advocacy for patients. By sharing their experiences, such as Amy Rivera and Didi Okoh are not only combating stigma but also advocating for improved treatments.
Self-Management and Hope
While there is no cure, proper care, and education can significantly improve the quality of life for lymphoedema patients. Early intervention, compression therapy, and lifestyle modifications remain effective in controlling symptoms and preventing complications. Advocates point out the need to provide patients with the necessary instruments and information that they can use to manage their disease.
“Many people can live well with lymphoedema,” says Hazledine. Given appropriate care, treatment programs, and early interventions, patients can make the most of life.
The Path Forward
To decrease lymphedema, the cancer side-effect, there is a need for further investments in research, education, and healthcare services. Increased access to tertiary care and awareness within the medical community may prevent complications and enhance results for patients.