No one talks about this dangerous side-effect of cancer

Cancer survivors are still subject to more than just the physical and emotional trauma of their fight. Lymphoedema, a side-effect of cancer, is a lifelong condition with chronic, debilitating pain in many, often serves as a constant reminder of the person’s past plight. Lymphoedema continues to be underdiagnosed, under funded, and poorly understood despite its impact on millions worldwide.

In this article, we’ll explore the realities of living with lymphoedema as a side-effect of cancer, why it’s overlooked, and how patients and healthcare advocates are fighting for better awareness and treatment options.

What Is Lymphoedema and Why Is It So Misunderstood?

Lymphoedema is a chronic condition caused by a damaged or dysfunctional lymphatic system, the body’s network responsible for maintaining fluid balance, immune function, and waste removal. When this system fails, fluid accumulates in tissues, causing painful swelling that can severely affect mobility and quality of life.

It is not uncommon for this condition to occur as a consequence of surgery, radiation, or lymph node dissection in cancer survivors. Lymphoedema occurs in particularly high proportions up to 35% among breast cancer patients post-treatment. Nevertheless, the disease condition is not confined to cancer, it can be also caused by factors including genetic disorders, obesity, infection, and injury.

Despite its widespread impact—affecting around 250 million people globally—lymphoedema is alarmingly underdiagnosed. A great number of patients have been afflicted in silence for years because of the absence of awareness on the sides of the public and clinical staff.

One study found that medical students receive less than 25 minutes of education on the lymphatic system during their entire training. This knowledge deficit also leaves several doctors with the inability to diagnose or manage lymphoedema appropriately.

Living With Lymphoedema: The Physical and Emotional Side-Effect of Cancer

For patients, lymphoedema is more than just swelling. It is a disabling condition affecting all aspects of daily living. Swollen limbs can be weighted, painful, and disfiguring, leading to virtually impossible daily tasks such as gait and standing. Psychological difficulties, such as depression and social withdrawal, also plague a great number of patients, who are affected in the two ways that their appearance is changed and their autonomy is hindered.

Matt Hazledine, a lymphoedema awareness campaigner from the UK, developed the disease after suffering a lower leg infection. “It was life-changing,” he says. His leg swelled by 60%, adding over 8kg of weight and leaving him struggling with mobility and mental health.

The lack of accessible treatment only compounds the problem. In the UK, for instance, there are a maximum of only five specialist physicians for lymphoedema at two large centers. Patients often travel great distances for care—or worse, go untreated altogether.

In the US, the situation is similarly dire. This health insurance often does not pay for the required therapies, and many patients are left to manage the financial cost. Annual costs of caring for lymphoedema—with admissions to hospital, compression stock, and lost wages—can exceed thousands of dollars per patient.

The Fight for Better Awareness and Care

However, challenges exist, and yet patients and advocates are endeavoring to put lymphoedema in the light. The Lymphoedema Support Network and Ninjas Fighting Lymphedema Foundation are doing advocacy and information provision for people affected by the Lymphoedema Syndrome.

The research funding shortage is one of the biggest impediments to advances. Experts report that we are “100 years behind” in understanding lymphatics as compared to the rest of the medical fields. This lack of focus has stalled the development of new treatments and diagnostic tools.

However, some promising advancements are on the horizon. Researchers are exploring wearable devices that could help patients manage swelling and pain at home. Advocates are also calling for improved medical training so that future doctors will be better able to diagnose and manage lymphoedema.

Hazledine stresses the need for early intervention and patient education. By the time effective treatment and support are found early on, it can help to turn the tide of living with the condition, he said.

A Silent Pandemic That Demands Action

Lymphoedema is commonly referred to as a “silent condition”, but for the millions living with it, there is nothing hidden about how it affects them. Patients suffer a painful daily recollection of their illness and are often made to feel like their struggles are not being taken into account by the healthcare system.

Advocates argue that improving lymphoedema care would not only enhance patients’ quality of life but also reduce healthcare costs in the long run. Research indicates that adequate treatment can reduce complications (e.g., cellulitis), a highly common and life-threatening infection, by as much as 94%.

For people living with lymphedema, the battle is not only with the disease itself but also with the stigma associated with it and the neglect. “You’re not alone,” says Hazledine. With appropriate management, you can live well with lymphoedema (LL/LKCE).

Key Takeaways for Patients and Caregivers

Early Diagnosis Is Crucial: When you experience recurrent swelling, pain, or limitation of movement, seek a specialist as soon as possible.

Daily Management Makes a Difference: Compressible garments, lymphatics massage, and everyday physical activity may alleviate symptoms.

Seek Support: Join support groups and meet other people who know what it is like to have lymphoedema.

Despite the continuing low awareness of lymphoedema, the concerted efforts of patients, researchers, and advocates have created a positive prospect for a brighter future. Shining a light on this shadow disease empowers us to strive for a world where no patient is overlooked or alone in their fight.