Lymphoedema: The Unspoken Cancer Side Effect That Needs More Awareness

Patients who survive cancer can be left with a chronic, incurable, and often painful condition. Both sufferers and healthcare professionals are working tirelessly to raise awareness of this hidden issue.

During a visit to the oncologist about his cancer treatment, my late uncle pointed to his legs – both were swollen to about three times their normal size. He was exhausted, in pain, and struggling to move due to the extreme swelling.

“Oh, that’s lymphoedema, there’s nothing we can do about that,” the doctor casually remarked, dismissing my uncle’s discomfort and concerns.

I was stunned by the doctor’s indifferent response to something causing my uncle so much distress and severe mobility issues. Lymphoedema often affects cancer patients or those undergoing cancer treatments, but I couldn’t fathom why nothing could be done to ease my uncle’s suffering.

What happened to my uncle wasn’t unusual. Lymphoedema is a common condition affecting 250 million people worldwide. In the UK, 450,000 individuals are living with lymphoedema, and in the US, the number is as high as 10 million. Yet, it remains a “hidden disease” – a condition that is underresearched, underdiagnosed, and receives minimal attention. Lymphoedema is a chronic, incurable condition that causes excessive swelling due to a damaged lymphatic system, the network in our body responsible for maintaining fluid balance in tissues. It occurs when lymph fluid cannot drain properly from the body due to dysfunction or injury to the lymphatic system.

The lymphatic system is a network of glands and vessels that forms part of the body’s circulatory system. It plays a vital role in removing excess fluid and proteins from tissues, filtering it, and returning it to the bloodstream. It is crucial for immune function, waste removal, and maintaining fluid balance. It also defends against diseases by circulating white blood cells (lymphocytes) that target viruses, bacteria, fungi, and parasites. If you’ve ever felt a mysterious bump on your neck while sick, it’s likely your lymphatic system helping you fight an infection.

“The lymphatic system is very complex,” says Kimberley Steele, a former bariatric surgeon at John Hopkins University in Baltimore, and program manager for the lymphatic research programs at ARPA-H, a US federal health agency. “It permeates every organ and tissue, and as surgeons, we can’t see it because the vessels are translucent. It’s only when you’re severely affected that you realize how much it does for you.”

Dysregulation of the lymphatic system has been linked to many chronic disorders, including heart failure, Alzheimer’s, inflammatory bowel disease, and cancer.

A Silent Pandemic

“Lymphoedema can affect anyone, regardless of gender, age, ethnicity, or socioeconomic status,” says Karen Friett, CEO of the Lymphoedema Support Network, a UK-based non-profit.

The condition is a frequent consequence of certain cancers and their treatments, such as surgery or radiotherapy, which can damage or remove lymph nodes. For example, one in five women treated for breast cancer develop lymphoedema, while between 2-29% of prostate cancer treatments result in the condition. It can occur in up to 90% of head and neck cancer cases.

However, cancer is not the only cause. Lymphoedema can also be a genetic condition (primary lymphoedema), or it can develop from injury, obesity, or infection (secondary lymphoedema). Matt Hazledine, author and founder of the UK non-profit Lymphoedema United, developed secondary lymphoedema in 2011 after suffering a severe episode of cellulitis, a potentially life-threatening bacterial infection.

“The infection hit suddenly and painfully,” Hazledine recalls. “The result was severe swelling in my left leg, diagnosed as lymphoedema.” His leg swelled by about 60%, gaining 8kg (17.6lbs). “At 40, it was life-changing.”

Lymphoedema comes with enormous physical, psychological, and socioeconomic consequences. The condition is not only painful but can be disfiguring and lead to loss of mobility, independence, productivity, and even depression. With no cure, treatment is generally palliative and requires careful daily management, but this is often unavailable due to a shortage of services, expertise, and a “postcode lottery” for treatment. In the US, access to care is inconsistent, and many health insurance companies fail to cover lymphoedema treatments.

“For many people, accessing even basic care is impossible,” says Friett. “Lymphoedema services across the UK are closing, and patients are being ignored while their condition worsens due to a lack of support.”

Hazledine compares his early years managing lymphoedema to “wading through thick treacle in the fog.” Some cancer survivors have told him, “They wish the cancer had taken them, because their lymphoedema is a constant reminder of their cancer journey.”

“They view lymphoedema as a greater challenge than cancer itself,” Hazledine adds.

Some clinicians refer to lymphoedema as an overlooked pandemic, recognizing its global public health impact. The condition remains underdiagnosed and underresearched, largely due to a lack of awareness. Patients can wait decades for a diagnosis while their symptoms worsen, sometimes resulting in disability. “I couldn’t care for it because I didn’t know what it was,” says Amy Rivera, who was born with primary lymphoedema. After 32 years of misdiagnosis, Rivera finally found a specialist who diagnosed her with Milroy’s disease, a rare lymphatic disorder. By then, her symptoms were severe.

“My left leg was 200% larger than my right. It was painful and heavy,” she recalls. “I couldn’t wear skirts or scrubs, and I couldn’t stand for long.” Rivera had to change careers and eventually founded the Ninjas Fighting Lymphedema Foundation to raise awareness. She also now runs Rivera Hybrid Solutions, a company offering training and equipment to manage lymphoedema.

Rivera’s symptoms were often dismissed by doctors, and a lack of awareness led to more damage. Her physicians mismanaged her condition, even prescribing diuretics, which resulted in kidney failure during her childhood.

“I was gaslighted by a doctor who told me, ‘You’ll be in a wheelchair by 35, so enjoy what you can now. It’s just swelling, there’s nothing we can do.’”

Rivera now spends six to seven hours a day managing her lymphoedema. “It’s not just swelling. It’s painful and debilitating,” says Friett.

A Deadly Complication

Lymphoedema patients are at high risk of developing recurrent cellulitis, an infection that affects the skin and underlying tissue. Cellulitis is a major cause of emergency room visits and hospitalizations. Many patients struggle to get diagnosed, leading to frustrating delays that worsen their condition.

Didi Okoh, a 2024 Paris Paralympian bronze medallist who has primary lymphoedema, recalls being ignored by doctors when she developed cellulitis twice. “It was life or death,” Okoh says. “I was left without treatment for hours, even though I had all the symptoms of cellulitis.”

Each infection causes irreversible tissue damage, further worsening her condition. “Every time I get an infection, my leg gets bigger, and it never returns to its previous size.”

“If we treat lymphoedema properly, we can reduce cellulitis infections,” says Friett. Cellulitis is one of the most common reasons for emergency hospital admissions. In England, the NHS spends around £178m ($225m) annually on hospitalizations due to lymphoedema-related cellulitis. In the US, lymphoedema patients incur approximately $270m (£213m) in hospital charges each year.

These costs could be minimized with proper treatment. A study commissioned by the National Lymphoedema Partnership in the UK found that appropriate treatment could reduce complications by 94% and hospital admissions by 87%.

Despite its vital role in the body, the lymphatic system is often neglected in medical education. In the US, less than 25 minutes of an entire medical degree is dedicated to the lymphatic system. Combined with underfunding and insufficient research, this means lymphoedema is widely overlooked.

“We’re at least 100 years behind on research,” says Kristiana Gordon, a consultant physician at St George’s University Hospital in London, which is the only UK hospital with a dedicated lymphatic system module for its medical students.

Spiralling Costs

In the UK, only five physicians specialize in lymphoedema across two centres. Patients often travel long distances to see specialists. Gordon’s patients have traveled from as far as Scotland, the Falkland Islands, and North America due to a lack of local expertise.

The absence of support and proper treatment leads to enormous costs for both patients and healthcare systems. Around 70% of lymphoedema patients don’t receive the care they need, resulting in complications that require more intensive treatment. One study found that for every £1 ($1.3) spent on lymphoedema services, the NHS saves £100 ($126). Breast cancer patients with lymphoedema can spend up to $8,116 (£6,426) annually on various treatments.

In the US, cancer survivors with lymphoedema face costs up to 112% higher than those without the condition, impacting both their finances and productivity.

Despite this, lymphoedema services remain underfunded and ignored.

However, studies show that with proper care, many patients live well with lymphoedema. “Once people receive the right treatment plan and support, they can manage their condition effectively,” says Hazledine.

Today, Okoh, Hazledine, and Rivera manage their condition well, having learned how to thrive with lymphoedema. They hope their stories will inspire others not to face the same struggles they did.

“I wanted to make it easier for others to find the right management strategy and support,” says Hazledine. “You’re not alone. You can live well with lymphoedema.”