Frequently asked questions
Here we hope to answer the most commonly asked questions about lymphoedema and treatment in Ireland.
If you think you may have lymphoedema, the first step is to get it correctly diagnosed. If you notice any swelling, tell your GP (family doctor) as soon as possible. He or she can refer you to a trained lymphoedema specialist for assessment and treatment.There are four main ways to treat and control lymphoedema:
- Skin care
- Compression (with bandages or garments)
- Manual lymphatic drainage (MLD) or simple lymphatic drainage (SLD)
If you have severe swelling, your lymphoedema specialist may recommend more intensive treatment. This is called combined decongestive therapy (CDT) or decongestive lymphatic therapy (DLT).
Because lymphoedema is a progressive disorder, without early diagnosis and management by a trained professional, serious health complications can occur. Complications include infections such as:
- Lymphadenitis (in severe cases sepsis)
- Skin ulcers
Without appropriate, individualised treatment, lymphoedema swelling may progress making the skin prone to thickening and the development of fibrosis and other secondary changes.
People at risk of lymphoedema need to learn the early warning signs to avoid complications. For those diagnosed with lymphoedema, it is vital to be aware of the symptoms of infection and seek treatment at the first signs. In addition to their inherent danger, recurrent infections can further damage the lymphatic system and set up a vicious cycle.
Those most at risk of lymphoedema need to know the early warning signs and seek early diagnosis and treatment by a qualified lymphoedema practitioner which can significantly reduce the risk and severity of the impact the disorder has on the patient.
Early warning signs of lymphoedema can be intermittent and may include:
- Transient swelling of a limb or other region of the body
- Infection (due to lymph stasis) is often the first sign of a problem
- Feelings of aching, heaviness, stiffness in the affected body part
- Limitation of movement
- Tightness or temperature changes to areas of the body
- Clothing, jewellery or shoes may feel tighter
- Swelling may be aggravated by heat, overuse, sustained positions and prolonged inactivity and more obvious at the end of the day
Many conditions may cause similar symptoms however, if early warning signs are experienced, other possible causes of the swelling should be excluded.
Lymphoedema Ireland is urging people who suspect they have symptoms of lymphoedema to see their doctor and request a referral to a specialist lymphoedema practitioner. To locate a practitioner, patients and doctors should contact Manual Lymphatic Drainage Ireland, the professional body of health practitioners who specialise in the treatment of lymphoedema www.mldireland.com
If you have lymphoedema you should be entitled to:
- Prompt referral to a lymphoedema specialist for assessment and treatment planning
- A comprehensive lymphoedema treatment programme with intensive management, if needed
- The provision of compression garments, as prescribed by your lymphoedema specialist
- Psychological and dietary support, which is important for the holistic treatment of lymphoedema
There is no cure for lymphoedema. It is a progressive disorder that can have a devastating impact on patients’ lives. However, if diagnosed and treated early by an experienced specialist, the extreme swelling can be controlled and reduced, infection prevented and the range of movement of the affected area can be improved to limit the extent of the disorder and the impact it has on the life of the patient and their family.
Treatment should be adapted the individual needs of patients and should seek to reduce swelling and maintain normal function and movement in the affected limb. The current international standard of care for managing lymphoedema includes –
- Compression bandaging (multi-layer inelastic bandaging) as well as specialist measured compression garments
- Manual Lymphatic Drainage (MLD) or Simple Lymphatic Drainage (SLD)
- Skin care
The combined approach detailed above has been shown to be effective in large numbers of studies demonstrating limb reductions of 50-70% or more, improved appearance of the limb, reduced symptoms, improved quality of life and fewer infections after treatment. Even people with progressive lymphoedema for more than 30 years or more before starting therapy have been shown to respond. While lymphoedema is not curable, it can be alleviated with appropriate management.
Lack of treatment for lymphoedema can lead to increased swelling and pain, irreversible damage to the lymphatic system, recurrent infections, the inability to work and reduced psychological wellbeing and quality of life. Potential cost savings could be realised from more effective management of lymphoedema patients, particularly in relation to hospital admissions for cellulitis and septicaemia.
At birth, about one person in 6,000 will develop primary lymphoedema (International Consensus: Best Practice for the Management of Lymphoedema, Lymphoedema Framework). However, these figures are likely to underestimate the true prevalence given the lack of awareness and the under diagnosis of the condition.
The incidence of secondary lymphoedema in Ireland following treatment for cancer treatment is unknown. Thanks to advances in the early detection and treatment of cancer, over 60% of people in Ireland survive for five years or longer after a cancer diagnosis and go on to live a normal and healthy life.
Up to 100,000 people are now living with cancer in Ireland and there is a growing need to understand better the life changing implications a cancer diagnosis brings. Lymphoedema incidence estimates for various cancers range between 5% and 66%. Taken together conservative estimates suggest that 20% of breast, genitourinary, gynaecological, or melanoma survivors will experience secondary lymphoedema.
Lymphoedema Ireland has examined the National Cancer Register and examined the prevalence of breast, prostate, melanoma and gynaecological and genitourinary cancers. Taking the conservative estimate of a rate of 20%, a minimum of 1,263 people develop lymphoedema following treatment for cancer each year.
These people will live with lymphoedema, along with the other consequences of cancer treatment, for the rest of their lives. Examining the number of survivors at 15 years, it is estimated that 10,678 cancer survivors are living with secondary lymphoedema following a cancer diagnosis.
If these figures for secondary lymphoedema following cancer treatment are taken together with the estimate relating to primary lymphoedema, Lymphoedema believes it would not be unreasonable to expect that close to 15,000 people are living with lymphoedema in Ireland today. This figure is far in excess of the number of people reported to be living with either multiple sclerosis or Parkinson’s disease in Ireland today.
Yes. Cancer cases in Ireland are expected to rise to 42,000 annually by 2020. The number of people aged over 65 in Ireland will double over the next 30 years. While many people will enjoy good health, the number of new cancer cases will rise steadily, to reflect the ageing population.
People are also living longer with and after cancer. This naturally requires consideration of the future of service provision and the need to examine risk identification, early detection and the sustainable provision of suitable treatment in order to manage the demands that these individuals will place on the health services as they seek to continue to live full active lives and contribute to society and the economy.