Ask the expert: Lymphoedema

March is Lymphoedema Awareness Month. Lymphoedema can be a side effect of some breast cancer treatments, such as surgery and radiotherapy, due to damage to the lymphatic system for the breast or arm or removal of lymph nodes from the armpit or breast. It can cause swelling and discomfort, and can be serious if left untreated.

The Beacon invited two experts to share their advice on how to live well with lymphoedema. Associate Professor Elizabeth Dylke is President of the Australasian Lymphology Association, a not-for-profit organisation for lymphoedema practitioners and those working or interested in lymphoedema. She is passionate about lymphoedema research, including supporting new researchers and clinically driven projects.

How important is an early diagnosis of lymphoedema?

Early diagnosis is critical because it gives people more treatment options. It can also limit progression of the swelling and prevent skin changes, which can be hard to manage once they start.

What are the signs and symptoms of lymphoedema people should be aware of?

Breast cancer-related lymphoedema generally occurs in the arm, hand, chest wall and breast area on the treated side.

Early signs and symptoms to look out for are swelling and skin changes. Be aware of the way your clothes feel on your body, particularly your arm. Does your arm feel swollen or heavy or do your sleeves feel tighter? Can you see the veins on the back of your hand? Do your rings or watches fit like they used to?

A lymphoedema therapist can assess any changes and let you know if it is lymphoedema.

A lymphoedema diagnosis can affect people’s physical and mental wellbeing. What can help?

Once you develop lymphoedema, it requires lifelong management because there is no cure for it yet. This can have a significant impact on you physically and mentally.

It’s helpful to build a good community around you. This might include finding a lymphoedema therapist, connecting with another person with lymphoedema, or talking to a psychologist or counsellor. There are also active Facebook communities for people with lymphoedema where they share tips about what works for them, where to find clothes that fit and what funding is available for compression garments and other treatments.

We know the general medical community lacks knowledge about lymphoedema, so having the support of an accredited lymphoedema practitioner is crucial.

Are there any advances in technology in treating lymphoedema?

Until recently, the lymphatic system has been poorly studied, but now there is a lot of research happening in this field. As our understanding of the lymph system improves, treatments will improve. Surgery and other treatment options are being explored, and there is also recent research into using compression garments as a preventative measure.

What is the Australasian Lymphology Association doing to help people with lymphoedema?

Our new mission statement is ‘excellence in healthcare for people with lymphoedema’. This includes equity of access to the right treatment and support. We are growing the lymphoedema community and ensuring the medical community is trained and educated in lymphoedema, which will lead to better understanding and care for people with lymphoedema.

Kim Toyer is an accredited lymphoedema therapist and helps guide people to be active in all aspects of lymphoedema care from early detection to coping with chronic dysfunction. She is on the Australasian Lymphology Association’s Board and works at the Macquarie University’s ALERT Program, which provides evidence-based treatment for all stages of lymphoedema, education for health professionals and translational research to guide treatment and education.

What can people do at home to manage lymphoedema?

There is no one way of treating lymphoedema. The management of your lymphoedema needs to fit in with your lifestyle, needs and preferences.

Having the right tools in your personalised toolbox will help you manage your lymphoedema on a daily basis. These tools could include the best skin care for you, the right compression garment, a form of exercise that is safe and enjoyable, and manual lymphatic drainage (often called massage).

Being active, building muscle and strength, maintaining a healthy weight and keeping your blood pressure in check will help you manage and live well with lymphoedema. Other tools include protecting the lymphoedema affected area from damage or injury so you can pursue hobbies you enjoy, such as gardening.

Compression garments need to fit snugly to be effective. An accredited therapist will provide the best fitting garment because they can measure and customise it for you. Like everything you wear and wash regularly, your compression garment will need to be replaced in a timely fashion, and if your weight fluctuates, you may need to get a new one fitted.

If you’re doing your own manual lymphatic drainage, this is likely to need to be slow, firm and directional massage, generally towards your armpit for arm lymphoedema caused by breast cancer treatment. This change in drainage region is a recent update and applies to most women at risk of or with arm lymphoedema after breast cancer treatment. Some people prefer to have a regular session with a therapist for this, and some choose occasional sessions when their arm, chest or breast feels fuller.

Why do people see a lymphoedema therapist?

Some people are concerned that they are developing lymphoedema. Sometimes they do have early lymphoedema and we can act quickly to limit its progression. Sometimes they are just experiencing normal swelling due to chemo or treatment-related weight gain.

Most need help with manual lymphatic drainage, which helps reduce swelling and discomfort if done effectively.

For those who have had lymphoedema for a long time, there may be something new for them to explore. In the past five to 10 years, new options, new products and new devices have come on to the market as our understanding of the lymphatic system has improved.

What can people expect from a lymphoedema therapist?

A therapist can work with you to find out what works for you and your lifestyle in terms of managing the condition. Different therapists and clinics offer different options. Some focus on lymphatic drainage, while others focus more on education, exercise and compression for self-management, so find the one that meets your needs. A therapist can also assess how you’re moving and treat any tight areas to keep you moving well.

Are there common myths or misunderstandings about lymphoedema?

There is a lot of misinformation about what causes lymphoedema, and also some outdated messages that put unnecessary limitations on what people with lymphoedema can do.

Our understanding of lymphoedema has changed over time, so check with a trusted and knowledgeable source to see if the advice you were given in the past has changed based on evidence-based research.

What other lymphoedema treatments are available?

The majority of people will do very well with personalised evidence-based strategies like those mentioned above. Other lymphoedema treatments include low-level laser therapy (sometimes called photo-biomodulation), negative pressure therapy, and sequential pumps for manual lymphatic drainage at home.

How can people find an accredited lymphoedema therapist?

The Australasian Lymphology Association has an online directory to help you find an accredited lymphoedema therapist near you. Find someone who you connect with and trust. Don’t hesitate to shop around until you find one that meets your needs.

Is there a topic you’d like to ask an expert about? Let us know by emailing contact@nullbcna.org.au.

LYMPHOEDEMA RESOURCES:

My Journey

Understanding lymphoedema following breast cancer treatment

Webcast: Living with lymphoedema – the conversation continues

Find an accredited lymphoedema practitioner

Issue 90
Autumn 2022