Professor John Boyages is Director of the Lymphoedema Research, Education and Treatment Program, Professor of Breast Oncology and an Associate Dean at Macquarie University, Sydney. He is a radiation oncologist and author of the Taking Control series of books.
Lymphoedema is swelling caused by a disruption to the lymphatic system. It usually occurs in the arms or legs, but can also occur elsewhere in the body, including the breast.
Known risk factors for developing lymphoedema include obesity, surgical axillary dissection, radiotherapy to the armpit or collarbone, and taxane chemotherapy Extreme heat or trauma/infection in the affected arm can also trigger lymphoedema or make it worse.
There is a lifetime risk of lymphoedema after surgical or radiation treatment to the armpit area (axilla) or the lymph nodes above the collarbone (supraclavicular fossa). The risk is higher for women who receive extensive treatments, such as surgery followed by radiation to the armpit and chemotherapy (particularly taxanes).
Since sentinel node biopsy was introduced in 2001, the incidence of lymphoedema has fallen. A large Australian clinical trial compared the incidence of lymphoedema for women with no cancer in their lymph nodes who had sentinel node biopsy or axillary clearance. Three years after surgery, 8 per cent of patients who had a sentinel node biopsy had lymphoedema compared to 15.5 per cent of those who had an axillary clearance.
Keep using your arm normally to help move the lymphatic fluid and stop it building up.
Report any changes in arm symptoms, such as heaviness, aching or early swelling, to your doctor or qualified lymphoedema therapist.
Monitor your arm with L-Dex and/or tape measures to help detect lymphoedema as early as possible.
Lymphoedema management aims to detect it early, prevent it getting worse, reduce swelling, reduce the risk of cellulitis – (a more serious infection that often requires hospital admission for intravenous antibiotic treatment), and improve function and quality of life.
For mild cases, we recommend exercise, self-lymphatic drainage and fitting of a compression garment.
More severe cases may need good skin care, manual lymphatic drainage (massage by a professional therapist that improves lymph flow), fitting a compression garment, exercises to increase lymphatic flow and professional psychosocial support.
Nurses or allied health professionals with lymphoedema management training can assess your lymphoedema and give you strategies to help manage it.
Simple strategies you may like to adopt are:
Use the affected limb normally for daily activities at home, work and during leisure time.
Maintain a healthy weight with regular exercise.
Use moisturising cream to keep the skin moist and reduce the risk of infection. I recommend massaging in an upward movement towards the armpit.
There is debate about the need to wear compression garments during flights if you are at risk of, but don’t have, lymphoedema. You may like to discuss your risk factors with your doctor or lymphoedema therapist before you travel. If you do have lymphoedema, just wearing a compression sleeve, which should be carefully fitted, is not enough – good hydration, moving the arm about at intermittent periods and deep breathing is also important, especially on long flights.
Many people living with advanced lymphoedema feel desperate. The condition can impact physical, functional and psychological parts of their life. A mastectomy scar can be hidden, but a swollen arm cannot.
Macquarie University Hospital’s Advanced Lymphoedema Assessment Clinic is investigating new treatments and is one of about five centres in the world offering a surgical approach to managing lymphoedema through liposuction or lymph node transfer.
Initial results from the liposuction of lymphoedema have shown that people have had a significant reduction in their symptoms, and are usually back to normal six months after liposuction, and are always back to normal 12 months later.
Lymph node transfer surgery is still very experimental and more research needs to be done. For more information see: www.muh.org.au/ServicesSpecialties/LymphoedemaProgram.aspx
Find a qualified lymphoedema therapist near you who is registered on the National Lymphoedema Practitioners Register (NLPR) by visiting www.lymphoedema.org.au.
The Advanced Lymphoedema Assessment Clinic is the only one of its kind in Australia. It aims to optimise positive outcomes for people living with lymphoedema. If you wish to make an appointment, please call the Clinical Care Centre on (02) 9887 8899.
The Australasian Lymphology Association has developed a Lymphoedema Patient Registry, found at www.lymphoedemaregistry.org.au, to allow people living with all types of lymphoedema a place to describe their lymphoedema and complications anonymously and also volunteer to be contacted for participation in future lymphoedema research.