Lymphoedema: The 'hidden' cancer side-effect no one talks about

Patients who beat cancer can be left with an incurable, chronic and painful condition. Sufferers and doctors alike are fighting to bring this hidden condition to light.

During a visit to the oncologist to discuss his cancer treatment, my late uncle gestured to his legs – both limbs had swollen to around three times their normal size. He was fatigued, in pain, and unable to move normally because of the excessive swelling

"Oh, that's lymphoedema, there's nothing we can do about that, I can tell you that much," the clinician said in response, dismissing my uncle's pain and concerns.

I remember being shocked at the blasé attitude of the doctor to something that was causing my uncle so much discomfort and serious mobility issues. Lymphoedema can often occur in patients with cancer or who are undergoing cancer treatment. I couldn't believe there wasn't anything the doctor could do to alleviate my uncle's pain.

What happened to my uncle wasn't unique. Lymphoedema is an incredibly common condition, which affects 250 million people globally. In the UK, 450,000 individuals have lymphoedema, while in the US there are as many as 10 million people suffering from the condition.

Despite this, it remains a "hidden disease" – one that gets little attention, has been underresearched and underdiagnosed.

Lymphoedema is a chronic, incurable condition that causes excessive swelling due to a damaged lymphatic system, a network in the body responsible for maintaining fluid balance in tissues. It occurs when lymph fluid is unable to properly drain from the body, due to a dysfunction or injury to the lymphatic system.

The lymphatic system is a network of glands and vessels that forms part of our body's circulatory system. It plays a vital role in whisking away excess fluid and proteins that leak out of tissues, filtering it and returning the fluid back to the bloodstream. It is vital for immune function, waste removal, and maintaining the right fluid balance in your body. It also serves as a key line of defence against diseases, continuously circulating white blood cells known as lymphocytes that hunt out viruses, bacteria, fungi and parasites. If you've ever been sick, and felt a mysterious bump on your neck, it's most likely your lymphatic system helping you fight an infection.

"The lymphatic system is a very complex system," says Kimberley Steele, a former bariatric surgeon at John Hopkins University in Baltimore, US, and programme manager for the lymphatic research programmes at ARPA-H, a US federal government health agency.

"It permeates every organ and tissue, and as surgeons, we can't see it because the lymphatic vessels are translucent. It's not until you are really affected that you appreciate how much it does for you."  

Dysregulation of the lymphatic system has been shown to be a key characteristic in many chronic disorders, such as heart failure, Alzheimer's disease, inflammatory bowel disease and cancer.

"Lymphoedema can affect anyone, and doesn't discriminate on gender, age, ethnicity, or socioeconomic status," says Karen Friett, chief executive at the Lymphoedema Support Network, a non-profit in the UK.

The condition is a common consequence of certain cancers and the treatments for them, such as surgery or radiotherapy, as the lymph nodes can be damaged or removed. For example, one in five women treated for breast cancer are affected by lymphoedema while between 2-29% of prostate cancer treatments result in the condition. It can occur in 90% of head and neck cancer cases.

But cancer isn't the only cause. Lymphoedema can also be a genetic condition, which people are born with (primary lymphoedema), or it can be the result of injury, obesity, or infection (secondary lymphoedema).

Matt Hazledine, author and founder of UK non-profit Lymphoedema United, developed secondary lymphoedema in 2011 after suffering a severe episode of cellulitis, a potentially life-threatening bacterial infection that can quickly escalate to sepsis.

"The infection came out of the blue, in a very painful experience," Hazledine says. "The by-product of that was a very severe swelling in my left leg that was diagnosed as lymphoedema." His leg swelled so much it became around 60% bigger, gaining 8kg (17.6lbs) in extra weight. "At the age of 40, it was pretty life-changing," he says.

Lymphoedema patients face enormous physical, psychological and socioeconomic consequences. The condition can be not only painful, but disfiguring and lead to a loss of mobility, independence, reduced productivity and depression. With no cure, treatment for the condition is largely palliative and requires meticulous daily management. However this is rarely implemented due to severe lack of available services, expertise, and a postcode lottery for treatment. In the US, access to treatment is patchy and health insurance companies offer cover that applies to few, if any of the treatments available.

"For many people, trying to access the basic level of care, is impossible," says Friett. "Lymphoedema services [across the UK] are being shut down, patients are being ignored, and their condition gets worse every day because there isn't enough support for them."

Hazledine compares the initial years of trying to manage his lymphoedema to "wading through thick treacle in the fog". He says some cancer survivors have told him "they wished the cancer had taken them, because they wake up every single morning with a reminder of their cancer journey, because their lymphoedema is staring them in the face".

"They actually deem the lymphoedema to be more of a challenge than the cancer," says Hazeldine.

There are some clinicians who regard lymphoedema as an overlooked pandemic due to significant chronic public health problem is poses globally. There are comparatively few professionals specialised in its management, placing a substantial burden on health resources. Managing the condition is almost impossible for the majority of patients. 

The condition remains underdiagnosed, underresearched, and underfunded in most healthcare systems. This is mainly due to a lack of awareness and understanding about the disease. The consequence of this is that patients can wait decades for a diagnosis, while their symptoms get progressively worse, to the point of disability.

"I couldn't take care of it because I didn't know what it was," says Amy Rivera, who was born with primary lymphoedema. After 32 years of misdiagnosis, stigma, and isolation, Rivera finally found a specialist who was able to diagnose her with Milroy's disease, a rare lymphatic disorder. The lymphoedema symptoms were so severe by this point that Rivera struggled in her daily life while completing her nursing degree.

"My left leg was 200% larger than my right. It was so painful and heavy," she says. "I couldn't wear skirts, I couldn't wear my scrubs, [and] I couldn't stand." The condition meant that Rivera had to give up nursing and change profession, eventually founding a charity to raise awareness of the condition, Ninjas Fighting Lymphedema Foundation. She also now runs Rivera Hybrid Solutions, a company that offers training and equipment for managing lymphoedema symptoms.

Rivera says her own pain and symptoms were frequently dismissed and ignored by doctors for years and that a lack of awareness led to more damage. Her physicians mismanaged the condition and prescribed her diuretics medication, which led to kidney failure as a child, she says.

"I was gaslighted by a rude doctor who said 'you're going to be in a wheelchair by the time your 35, so you better get in what you can get in now, and enjoy your life as it is. It's just swelling, there's nothing we can do about it'," she says.  

Rivera spends six to seven hours a day managing the condition.

"Lymphoedema isn't just swelling. It's painful, it's debilitating. It impacts every aspect of your life," says Friett.

Lymphoedema patients also face a high risk of developing recurrent cellulitis, an infection of the layers of skin below the surface and underlying tissue. It is a major cause of emergency department visits and can result in lengthy hospital stays. Patients often struggle to get a diagnosis, leading to frustration and delays that can make the condition worse.

"I was crying in agony, trying hard not to pass out. Because I knew it wouldn't be good while I had a 41C (106F) temperature," says Didi Okoh, a 2024 Paris Paralympian bronze medallist who suffers from primary lymphoedema. Okoh says she was repeatedly ignored by A&E doctors when she developed cellulitis twice.

"It was literally life or death. Twice I have been left, once for seven hours, and once for three hours, without any treatment, despite me having all the symptoms of cellulitis, and telling [the doctors] you need to put me on antibiotics now, before I go into sepsis," she says. Each bout of cellulitis left her with irreversible tissue damage in her leg. "Every time I get an infection in that leg, it damages that leg. It resets to a bigger size, and I can't get it down to its prior size."

"If we treat lymphoedema properly, we reduce the incidence of cellulitis infections," says Friett. "Cellulitis is one of the most common emergency admissions to a hospital."

For example, in England the NHS spends around £178m ($225m) on hospital admissions due to lymphoedema complications, much of which is attributed to cellulitis infections. In the US, lymphoedema patients rack up around $270m (£213m) in hospital charges alone each annually.

These costs could be prevented, if patients had proper treatment, say those pushing for better recognition of the condition. A study commissioned by the National Lymphoedema Partnership in the UK showed that with appropriate treatment, it is possible to achieve a 94% decrease in complications, and an 87% reduction in hospital admissions.

Despite playing such a vital role in our body, the lymphatic system is almost entirely overlooked in most medical education systems. A survey conducted in the US found that throughout an entire medical degree, less than 25 minutes was dedicated to the lymphatic system.

Combined with a severe lack of research and funding into finding treatment solutions, it has meant that lymphoedema has been largely overlooked compared to the impact it has on millions of patients'

"We are at least 100 years behind on research [into the lymphatic system]," says Kristiana Gordon, consultant physician and associate professor at St George's University Hospital in London, which is the only teaching hospital in the UK to have a dedicated module covering the lymphatic system in its undergraduate medical degree.

"Even if the students aren't interested in lymphoedema, at least they will have heard of and seen it, and know where to send the patients," says Gordon.

In the UK, there are only five physicians dedicated and specialised in lymphoedema across two centres, says Gordon. Patients often have to travel large distances to see a specialist physician as there are relatively few with the level of expertise needed. Gordon's patients, for example, have travelled from as far as Scotland, Falkland Islands, and North America, because "they haven't got anywhere to go".

The lack of support and treatment available to lymphoedema patients results in staggering costs to both the patient and healthcare services. Some studies show that around 70% of lymphoedema patients do not receive the necessary treatment they need, leading to complications that require far more involved care. One study found that for every £1 ($1.3) spent on lymphoedema services, it saves the NHS £100($126). According to a global review, breast cancer patients who develop lymphoedema can spend up to $8,116 (£6,426) per year on a wide range of treatments.

In the US specifically, long-term cancer survivors with lymphoedema are left out of pocket by their condition with costs that are up to 112% higher than those without lymphoedema. The condition not only impacts their savings but their productivity.

Breast cancer patients suffering from lymphoedema face extra direct costs of up to $2,574 (£2,035) each year, and indirect costs of up to $5,545 (£4,384) per year. Those from a lower socioeconomic background are the most negatively impacted.

Yet despite this, lymphoedema services are largely underfunded, overlooked, and ignored.

However, studies show that a lot of patients who receive proper care do very well. "Many people can live well with lymphoedema," says Hazledine. "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."

Hazledine says that when he was diagnosed in 2011, there was no information on where to go for help or ongoing care. "When I went to my [doctor], lymphoedema was unknown to them. He at the time didn't know where to refer me for help. Unfortunately, that is the same story in 2024 – [doctors] still do not know enough about lymphoedema."

Today, Okoh, Hazledine, and Rivera are able to effectively self-manage their condition and thrive while living with lymphoedema. But it took them years to get to this point.

Not wanting others to experience the same difficulties they did a decade ago, both Hazledine and Rivera founded their own charities to help support lymphoedema patients.

"I wanted to short-cut that journey to finding the right management strategy and support for them," says Hazledine. 13 years after receiving his own diagnosis he says: "You're not alone, you can live well with lymphoedema."

* Katherine Wang is a research fellow at University College London in the UK who's work focuses on developing wearable devices to alleviate the pain and swelling caused by lymphoedema while allowing patients to self-manage their condition. Her work is inspired by the experience of her uncle's condition.

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