Lack of information about lymphedema leaves many patients undiagnosed

About 20 to 30 per cent of women with breast cancer develop the painful chronic condition that causes swelling most commonly in the arms and legs.

Sadaf Ahsan 6 minute read April 1, 2022
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Statistics on lymphedema suggest it's not as rare as it's been made out to be, especially when taking into consideration how many patients go undiagnosed. GETTY

Lymphedema Awareness Month has come to a close, but it doesn’t bring an end to the need for recognition of a lifelong health condition that often goes undiagnosed and still has few treatment options.

What is lymphedema?

It’s actually pretty simple: if, according to the CDC, we look at our lymph nodes as a drain, when that drain is clogged, the fluid remains. Lymphedema, then, is the swelling that can happen in the arms, legs or torso and sometimes other parts of the body if there is a buildup of lymph fluid in the tissues. It can also cause pain, discomfort and a risk of infection.

While some are born with lymphedema due to a defect in their lymphatic system, others can develop it later in life due to damage to their lymphatic system, most commonly as a result of cancer surgery and radiation therapy. Though it’s important to note some cancers carry a higher risk of this side effect, including breast cancer and prostate cancer.

A condition without a cure, lymphedema is manageable when diagnosed and treated early. Today, it is estimated that 20 to 30 per cent of women diagnosed with breast cancer develop lymphedema, while roughly one million Canadians are believed to be living with it, giving it a prevalence of 2.8 per cent. All of which suggests it’s not as rare as it’s been made out to be, especially when taking into consideration how many patients go undiagnosed.

“The perception that lymphedema is rare stems mainly from the lack of information within the medical community, as well as the general public, about the condition,” says Adriana Muth, director of the Lymphedema Association of Ontario (LAO). “The research into the lymphatic system is a newer area of medicine, and in many cases, doctors receive minimum, if any, training on lymphedema, while people — even when they have symptoms — do not know to ask about it.”

That’s also partly due to limited funding options and little work being done to research the condition, which is exactly why raising awareness is so crucial.

How is lymphedema treated?

While there is no cure, treatment options do exist, and include compression therapy to control swelling, exercise, regular skin care, and manual lymphatic drainage, which is a special form of massage that mobilizes lymphatic fluid. More severe cases may require surgery.

“We always prioritize education about preventative measures and self-management techniques and strategies [patients] can take so that they feel in control of their lymphedema rather than the other way around,” says Lindsay J. Davey, physiotherapist and clinic director and owner of Toronto Physiotherapy. “In general, adopting a healthy lifestyle, maintaining muscular strength and flexibility, a healthy body weight, hydrating regularly, and staying active is recommended for anyone living with lymphedema.”

Funding help

To help patients with financial difficulties find treatment and learn more about the condition, limited government financial assistance is available through the Assistive Devices Program (ADP) in Ontario. The LAO, too, offers a Compassion Fund, which is donation-based.

“In terms of raising hopes for a positive future for patients, given the specifics of this condition and the limited government help, it becomes a tricky proposition,” admits Muth, who notes that the LAO and its fellow provincial lymphedema organizations regularly work to connect with politicians about the condition and its impact on patients in hopes of establishing more affordable treatment for patients and accessing funding for research.

What is it like living with lymphedema?

Anna Kennedy, the Toronto-based editor of Pathways, a Canadian lymphedema magazine, and founding member and former executive director of the Canadian Lymphedema Framework (CLF), lives with lymphedema, and acquired the condition as a result of cervical cancer treatment at the age of 43.

“Both the large number of lymph nodes removed and the radiation I received as part of the cancer treatment put me at risk for lymphedema,” she says. “My left leg is affected with chronic swelling from the toes to the thigh. I have had cellulitis, a serious skin infection, three times. Each time, the lymphedema progressively gets worse. The early challenges were getting assessed and finding treatment, as most family physicians don’t know much about lymphedema. Finding resources and the treatment protocol was also a challenge.”

Cellulitis can lead to life-threatening sepsis, but Kennedy soon found that a healthy diet and active lifestyle kept her condition “intact.”

“I learned early on that, as with any chronic disease, learning everything I could about my condition and diligent self-care would give me the best success,” she says, adding that, now, “I am able to walk half marathons, continue my exercise routines and play tennis competitively.”

What are the recent developments in treatment?

In October 2021, a Surrey, B.C. hospital became the first in the province to perform a complex procedure called vascularized lymph node transfer (VLNT), which helps reduce the odds of lymphedema by transferring lymph nodes from a healthy donor site in patients who do not have functional lymphatic channels.

It was a step forward in terms of treatment and one beyond simple management of the condition and it was doable thanks to a $1.5-million investment from the Surrey Hospitals Foundation, again proving just why funding is so key. This procedure is nowalso performed at the McGill University Health Centre.

The other main type of surgery for lymphedema is lymphovenous bypass (LVB), which is for patients who have functional lymphatic channels that are blocked. It works to bypass the blockage.

But what do patients like Kennedy hope to see when it comes to future developments regarding lymphedema? Well, she says, a few things: more options in the products manufactured to provide the compression required to manage lymphatic fluid and swelling; success in the clinical trials underway for an anti-inflammatory drug that could help with the symptoms; and better consensus on which patients would benefit from surgical procedures through clear assessment and surgical protocols.

Along with the LAO and the CLF, there are other provincial lymphedema associations who can guide patients on where to access local resources for treatment as well as patient support groups. To find them, click here.

Sadaf Ahsan is a Toronto-based culture writer, editor and stereotypical middle child. She can be reached here.
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