Sometimes, the unexpected road provides the greatest blessings. Marize Ibrahim can attest to that.

Marize started her career in oncology as part of Hope & Cope’s innovative Rehabilitation Exercise Oncology Program (REOP). While most physiotherapists gravitate toward sports rehab, she focused on oncology rehabilitation. At first, it wasn’t easy.

Marize Ibrahim, lymphedema physiotherapist

As Marize explains, “It was a big learning curve. I spent many weekends at Starbucks, learning and trying to understand oncology terms, side effects of treatment and the role of rehab in this population. But as I attended tumour boards, I gradually began to follow conversations and understand more.”

While at Hope & Cope, she received funding to obtain her lymphedema certification, an intensive three-week training to become a certified lymphedema therapist. This eventually led her to work more with people who developed lymphedema.

“I’m blessed because I feel that cancer patients need specialized physiotherapists who understand their treatments,” Marize says.

What is lymphedema?

Lymphedema occurs when the lymphatic system becomes impaired due to obstruction or blockage of the lymph nodes. We often see this in cancer treatment which damage the lymphatic system. The lymphatic system is a network of vessels and tissues in the body. It’s part of our immune system that helps fight infections, regulate fluid balance, and eliminate waste products to keep you healthy. It can also be referred to as the plumbing system of the body.

When the lymphatic system isn’t working properly, lymphedema develops. It’s an accumulation of protein-rich fluid that can build up in damaged tissues, like your arms or legs. This causes a chronic swelling.

There are two types of lymphedema: primary and secondary.

  • Primary lymphedema means you’re born with an impairment in your lymphatic system. It’s usually caused by a genetic mutation that affects the development of the lymphatic system.

  • Secondary lymphedema can be caused by damage to the lymphatic system. Here are some causes:

    • cancer treatments like surgery and radiation

    • filariasis and podoconiosis, which are caused by tiny worms or dirt that get inside the body and block your blood vessels

    • wounds or infections

    • trauma

    • immobility

    • medication

    • musculoskeletal surgeries

    • rheumatological/neurological conditions

    • obesity

    • chronic venous insufficiency

When we talk about lymphedema in cancer patients, many people think it’s exclusive to breast cancer. However, this isn’t true. It can occur in different tumour sites, which may lead to lymphedema developing in the body part that was treated.

For example, head and neck cancers can result in lymphedema in the head and neck region. Gynecological cancers in women and prostate cancer in men can lead to lymphedema in the legs and genital region. And if lymph nodes are removed, patients with melanoma can develop lymphedema in that limb.

Managing lymphedema

To date, there is no known cure for lymphedema, so managing it is crucial. To do so, there are five pillars to consider:

  1. Exercise: Helps the lymphatic system to move and improves circulation. Additionally, maintaining a healthy weight prevents excessive strain on the lymphatic system.
  2. Skin care: Reduces the risk of cellulitis, a severe skin infection that requires medical attention.
  3. Manual lymphatic drainage: helps move fluid into healthy areas. This is encouraged to be done in conjunction with bandaging (during the reduction phase), not in isolation.
  4. Compression: Wearing compression garments (like sleeves and gloves, or garments for legs) during the maintenance phase helps to maintain fluid levels.
  5. Self management: which encompasses all of the above pillars, required to manage the disease and minimize its progression.

“Self-management is critical in the management of lymphedema,” Marize explains. “Someone with lymphedema has to live with this disease for the rest of their lives. So it’s essential for them to understand how these pillars all contribute to keeping the condition under control, empowering them to take control over this chronic condition.”

The unique challenges of lymphedema

Lymphedema is a chronic condition that requires constant attention. It’s also a reminder of one’s cancer history, which can be emotionally challenging to cope with. And support is not always readily available.

“Access to resources is a significant issue,” says Marize, “because not all hospitals have lymphedema therapists. In a perfect world, every patient undergoing cancer treatment should be assessed by a physiotherapist and lymphedema therapist. They can help return functional abilities and monitor for signs and symptoms of lymphedema development.”

The cost of compression garments can also be a financial burden. Fortunately, many patient advocacy groups fought hard to address this. Thanks to their efforts, today, the government of Québec provides some financial assistance to cover the costs of the garments. Still, there is lots of work to be done not just in Québec, but in Canada.

Early prevention and support for a greater quality of life

The REOP team focused on a preventative strategy. They conducted pre-op education sessions to help catch lymphedema early. Marize believes the key to effectively managing the condition starts with awareness and providing early access to lymphedema therapists.

“The earlier we can catch the lymphedema, the easier it is to manage,” adds Marize. “People want to help themselves. When they get to someone who knows how to treat it, they are relieved to get proper guidance and treatment.”

Support groups can be helpful, but they’re not for everyone. Some people may prefer one-on-one support from a healthcare professional instead. Men, in particular, may be less likely to join support groups, and it can be challenging to find a support group tailored to men with lymphedema. Ultimately, every case is different. What works for one person may not work for another.

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According to the World Health Organization, over 250 million people around the world live with lymphedema. In Western countries, the most common form is secondary lymphedema due to cancer treatment.

Marize says that more education, awareness, and early referrals are essential to improve the outcomes of people living with lymphedema.

“I encourage healthcare professionals, especially in oncology, to be more aware of this condition and to refer patients as soon as possible,” she urges. “Patients shouldn’t hesitate to ask the right questions and find the appropriate professional who can help them because we are around. Once they find the right professional, I think it will make a big difference in their lymphedema management. ”

March is Lymphedema Awareness Month. If you need help because you, or someone you love, suffers from lymphedema, here are some resources to help:

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