Many cancer survivors are left with a chronic, incurable condition called lymphoedema, BBC reports.
Patients, doctors, and advocates are pushing for greater awareness and support for this often-ignored health issue. For cancer survivors, the battle doesn’t always end with remission. While cancer treatments like surgery or radiotherapy can be life-saving, they sometimes leave behind a chronic and painful condition called lymphoedema. This condition, which causes excessive swelling due to a damaged lymphatic system, is affecting millions globally — yet it remains largely unrecognized, underdiagnosed, and underfunded.
Lymphoedema affects around 250 million people worldwide, with 450,000 cases in the UK and as many as 10 million in the US. Despite this, many healthcare providers still struggle to identify and manage it effectively. It’s a reality that leaves survivors feeling neglected and, in some cases, worse off than during their cancer journey.
“They actually deem the lymphoedema to be more of a challenge than the cancer,” says Matt Hazeldine, founder of Lymphoedema United, a non-profit advocacy group in the UK.
Lymphoedema occurs when the lymphatic system — a key part of the body’s immune and circulatory systems — is damaged, making it difficult for lymph fluid to drain properly. This leads to swelling, usually in the arms, legs, or face, but it can occur anywhere in the body.
The lymphatic system works to remove excess fluid and waste from tissues, while also fighting infections. But during cancer treatment, lymph nodes may be removed or damaged, causing the system to malfunction.
For example, 20% of women treated for breast cancer develop lymphoedema, while up to 29% of prostate cancer patients are affected. Head and neck cancers can result in the condition in up to 90% of cases.
But cancer isn’t the only cause. Some people are born with a dysfunctional lymphatic system (called primary lymphoedema), while others develop it later due to infections, obesity, or injury.
Lymphoedema is a lifelong condition with no known cure. Its symptoms can be physically and mentally draining. Swelling, pain, reduced mobility, and disfigurement are just a few of the issues faced by patients. Beyond the physical toll, it can lead to loss of independence, reduced productivity, and depression.
Amy Rivera, who was born with a rare lymphatic disorder known as Milroy’s disease, had her condition misdiagnosed for 32 years. By the time she was finally diagnosed, her left leg had swollen to twice the size of her right.
“My left leg was 200% larger than my right. It was so painful and heavy,” she says.
The severity of her condition forced her to give up her career as a nurse and instead establish the Ninjas Fighting Lymphedema Foundation, which supports others with the condition.
The day-to-day demands of managing lymphoedema are immense. Patients like Rivera spend hours each day wrapping limbs in compression garments, performing exercises, and using specialist equipment to manage swelling.
For retired steelworker Bensabio Guajardo, lymphoedema wasn’t just a side effect — it was a barrier to life-saving treatment. After being told he was too obese for a lung transplant, he was prescribed a weight-loss drug, Ozempic, which helped him shed 90 pounds. This made him eligible for the surgery he needed to survive.
Despite its prevalence, lymphoedema remains a “hidden condition” in many healthcare systems. There are several reasons for this:
- Lack of Awareness: Most doctors receive very little training on the lymphatic system. One US study found that less than 25 minutes of an entire medical degree is devoted to the lymphatic system.
- Shortage of Specialists: In the UK, only five specialist lymphoedema physicians work across two dedicated centers. Patients often have to travel long distances to see a specialist.
- Stigma and Misdiagnosis: Many patients report being dismissed by doctors or misdiagnosed for years before finally receiving appropriate care.
Amy Rivera recalls a moment when a doctor told her she would be in a wheelchair by age 35 and that “it’s just swelling, there’s nothing we can do about it.” This lack of understanding often results in patients being prescribed inappropriate treatments. Rivera herself was given diuretics, which ultimately led to kidney failure.
Similarly, cancer survivors like Hazeldine describe feeling “gaslighted” when their concerns were ignored. He recalls being told by a doctor that there was no solution for his condition, even as his leg swelled to 60% larger than normal.
While lymphoedema management requires long-term care, experts argue that early treatment could reduce overall healthcare costs. Without proper management, patients are at greater risk of infections like cellulitis, a skin infection that can lead to sepsis if untreated. Repeated infections cause permanent tissue damage and worsen swelling.
“If we treat lymphoedema properly, we reduce the incidence of cellulitis infections,” says Karen Friett, CEO of the Lymphoedema Support Network in the UK. “Cellulitis is one of the most common emergency admissions to a hospital.”
The financial burden of lymphoedema on health services is enormous. In the UK, hospital admissions for lymphoedema complications cost the NHS £178 million ($225 million) annually. In the US, hospital visits related to lymphoedema rack up around $270 million each year.
Studies show that for every £1 ($1.30) spent on early intervention and treatment, the NHS could save £100 ($126) in hospital costs. But as it stands, access to treatment is inconsistent and often dependent on where patients live.
After years of misdiagnosis, dismissal, and poor treatment, patients and advocacy groups are taking matters into their own hands. Charities like Lymphoedema United and Ninjas Fighting Lymphedema Foundation are helping patients access treatment and information.
For many, the first step to reclaiming control is education.
“Many people can live well with lymphoedema,” says Hazeldine. “If they can get educated, once they have the right treatment plan, and the right support from a healthcare professional, early on, that can help shape their self-management routine.”
But while self-management can help, the ultimate goal for patients and advocates is better systemic support. They want healthcare providers to receive more training on the lymphatic system, improved funding for research, and better access to treatment.
To ensure that lymphoedema patients receive the care they need, health systems must take action. Experts like Kristiana Gordon, a physician and associate professor at St. George’s University Hospital in London, stress that it starts with education. Her hospital is one of the few in the UK to offer a dedicated module on the lymphatic system in its undergraduate medical degree.
“Even if students aren’t interested in lymphoedema, at least they will have heard of it and seen it, and know where to send the patients,” says Gordon.
For many cancer survivors, living with lymphoedema is a daily reminder of their cancer journey. But with proper support, they can reclaim their independence.
“You’re not alone,” says Hazeldine. “You can live well with lymphoedema.”
Key Facts About Lymphoedema
- Global impact: 250 million people worldwide live with lymphoedema.
- Link to cancer: 35% of breast cancer survivors and up to 90% of head and neck cancer patients develop lymphoedema.
- Economic burden: US lymphoedema patients face up to $8,116 (£6,426) annually in hospital-related costs.
- Emergency visits: Complications like cellulitis cost the NHS £178m ($225m) annually.
