Understanding Lymphoedema PDF

PRACTICAL SUPPORT fact sheet Understanding Lymphoedema A guide for people affected by cancer T...

PRACTICAL SUPPORT fact sheet Understanding Lymphoedema A guide for people affected by cancer This fact sheet has been prepared to help The lymphatic system you understand more about lymphoedema, a possible side effect of some cancer The lymphatic system is part of the immune system. treatments. We hope this fact sheet will help It helps to protect the body from disease, get rid of you, your family and friends understand what waste, and drain fluid. It is a network of lymph nodes, lymphoedema is, how to recognise signs early lymph vessels and lymph fluid. White blood cells and how it can be managed. called lymphocytes are produced by lymph nodes. Lymphocytes are also produced by lymph tissue found in other parts of the body, including the spleen, bone marrow, thymus and tonsils. Lymphocytes help What is lymphoedema? to protect the body against disease and infection. Lymphoedema is swelling (oedema) that develops when lymph fluid builds up in the tissues under the Lymph nodes skin or sometimes deeper in the abdomen (belly) and chest areas. This happens when the lymphatic Tonsils system is not working properly. It usually occurs in an arm or leg, but can also affect other parts of Lymph nodes the body, such as the neck. See diagram for more Thymus are located throughout the information about the lymphatic system. body, but are found Bone in clusters in the marrow neck, underarms, Lymphoedema can be either primary (when the chest, groin, abdomen (belly) Spleen lymphatic system has not developed properly) and knees. Lymph or secondary (when the lymphatic system is nodes filter the lymph fluid as it damaged). This fact sheet is only about secondary passes into the bloodstream lymphoedema following treatment for cancer. When does lymphoedema develop? Cancer or cancer treatment can damage or block Lymph vessels the lymphatic system. When this occurs, lymph fluid carry lymph fluid from the tissues and organs doesn’t drain as it should and instead builds up in to the lymph nodes the tissues. This causes swelling. Lymphoedema can affect people at any time – during active cancer treatment, after treatment Lymph fluid or in remission (when the signs and symptoms is a clear, watery fluid that delivers nutrients of cancer reduce or disappear). Lymphoedema throughout the body can occur months or years after cancer treatment. and takes away viruses, bacteria, It can also develop while you’re living with advanced abnormal cells and cell debris cancer or receiving palliative treatment. It usually develops very slowly. Understanding Lymphoedema What are the risk factors? “My experience is that lymphoedema Whether or not you develop lymphoedema after is very manageable if you notice the treatment for cancer depends on the location of the signs early.” SUSANNE cancer, its stage and the type of treatment. While the risk is ongoing, most people who are at risk never develop lymphoedema. See page 3 for tips on on how to reduce the risk of lymphoedema. What is early intervention? Finding lymphoedema before you notice any signs Some risk factors for lymphoedema include: can reduce the risk of developing swelling. If you are surgery to remove lymph nodes – the more at risk of lymphoedema, ask your treatment team if nodes removed, the greater the risk regular screening check-ups are recommended for radiation therapy you and available near where you live. Early detection taxane-based chemotherapy drugs and early intervention using education, compression an infection in the at-risk limb garments and exercise helps to reduce the impact carrying extra body weight (overweight or obesity) of lymphoedema. injury to the lymphatic system (e.g. a tumour growing near a lymph node or vessel) underlying primary lymphoedema What are the early warning signs? inflammatory disorders such as arthritis Taking action quickly can reverse mild lymphoedema not being able to move around easily. and help reduce the risk of developing severe lymphoedema. As soon as you notice any warning signs in the affected area, it’s important to see your How common is lymphoedema? lymphoedema practitioner or doctor. Lymphoedema can occur after treatment for many different cancers (see below). There are few statistics Early warning signs include: about how common lymphoedema is after cancer feeling of tightness, heaviness or fullness treatment, and the incidence differs for each cancer aching in the affected area type. One study estimated that lymphoedema occurs swelling that comes and goes or is more in about 20% of people treated for cancers of the noticeable at the end of the day (or on waking vulva, vagina, ovary, uterus, cervix, breast, prostate, for head and neck cancer) or melanoma. tighter clothing, shoes or jewellery not being able to fully move the affected limb pitting of the skin (when gentle pressure leaves Commonly affected areas an indent on the skin). bladder cancer genitals, legs Contact a lymphoedema practitioner (see page 4) breast cancer arm, hand, breast, chest, trunk if you notice any of these signs or are unsure about cervical cancer genitals, legs your risk of developing lymphoedema. head and neck face, below the chin and/or neck If left untreated, lymphoedema can progress and cancer cause a range of problems, including: any part of the body, depending trouble moving around and doing usual activities melanoma on the area affected by melanoma discomfort and sometimes pain ovarian cancer genitals, abdomen/trunk, legs difficulty fitting into clothes or shoes prostate cancer genitals, abdomen/trunk, legs an increased risk of infections (see table, page 6) further hardening of the skin uterine cancer genitals, abdomen/trunk, legs lymph fluid leaking from the skin (lymphorrhoea) vulvar or vaginal very rarely, the development of angiosarcoma, genitals, abdomen/trunk, legs cancer a type of soft tissue cancer. 2 Understanding Lymphoedema How to reduce your risk of developing lymphoedema The risk of lymphoedema varies depending on the type of cancer, its stage and its treatment. Your doctor will talk to you about your risk. There are several things you can do to help reduce the risk of developing lymphoedema. These suggestions are also useful for people living with lymphoedema. If you notice changes in the affected part of your body, see your doctor, lymphoedema practitioner or nurse immediately. Exercise regularly Maintain a healthy body weight Keep physically active to help the lymph fluid flow. Any regular exercise (e.g. swimming, yoga, cycling or walking) Aim to stay in a healthy weight range. Carrying extra is helpful, as are activities like gardening and housework. weight can be a risk factor for developing lymphoedema. If you are carrying extra weight, talk to your doctor about Doing strength (resistance) training is usually okay. how to achieve a healthy weight. Increase the weight and intensity gradually, and be guided by how your limb responds. Cool down slowly. Eat a variety of nutritious foods each day. ▶ See our Nutrition for People Living with Cancer booklet. Start any exercise slowly and build up gradually. Visit an accredited exercise physiologist or physiotherapist to develop an exercise program. ▶ See our Exercise for People Living with Cancer booklet. Look after your skin Move normally but avoid pressure and strain Keep your skin clean. Wash with a pH-neutral soap and avoid scented products. Moisturise your skin every day. Dry and irritated skin is more likely to tear and break. Protect your skin and cuticles – don’t cut your cuticles Don’t try to protect the affected limb by limiting its during nail care; wear gloves for gardening, housework movement – using the limb normally will keep the and handling pets; use insect repellent to prevent lymph fluid flowing. insect bites; avoid cutting or burning your skin when Avoid heavy lifting that may result in strain or injury, such cooking; wear protective clothing, a broad-brimmed hat, as moving heavy boxes or furniture. This does not include sunglasses and sunscreen when in the sun. exercise or strength (resistance) training (see above). Seek urgent medical help if you notice redness, heat, pain Avoid pressure from clothing, underwear and jewellery. or think you may have a skin infection (see page 6). Tips for travelling Travel – by plane, train, bus or car – has not been shown to increase the risk of lymphoedema. Even so, you may choose to take simple precautions while travelling like wearing loose-fitting clothing, moving regularly and drinking plenty of water. People with lymphoedema, or who have had lymph nodes removed as part of cancer treatment, may be advised to wear a compression garment during long-distance travel. Talk to your lymphoedema practitioner or doctor before you go. 3 Understanding Lymphoedema Diagnosis of lymphoedema Doctors – your general practitioner (GP), surgeon Your lymphoedema practitioner or another health or oncologist may diagnose the condition, coordinate professional will ask about your medical history, your treatment plan and refer you to a lymphoedema and check the level of swelling and any pitting, practitioner. If you develop a skin infection (cellulitis, thickening or damage to the skin. The size of the see page 6), your GP will help to manage this. affected limb will be compared to the other limb, and any differences will be assessed. This is done in different ways: How to find a lymphoedema practitioner using a tape measure to measure the distance around the limb (circumference) You can ask your GP or specialist to refer you to a using a device with a painless, low-frequency lymphoedema practitioner for assessment, or you may electric charge (bioimpedance spectroscopy) find a practitioner yourself. The Australasian Lymphology Association has an online register of lymphoedema to calculate the amount of fluid practitioners. Visit lymphoedema.org.au and click on using a high-frequency, low-power “Find a Practitioner”. If you live in a rural or regional area, electromagnetic wave to measure the water you may need to travel to visit a lymphoedema practitioner content of the tissues or some clinics provide telehealth consultations. taking photos of more difficult to measure areas, such as the head, neck, trunk, breast and genitals using a doppler ultrasound to rule out a blood clot less commonly, using magnetic resonance Treatment and management imaging (MRI), computerised tomography (CT) or The aim of treatment is to help the flow of lymph an ultrasound to show extra fluid or fat in tissues fluid through the affected area. This will help reduce or tissue changes swelling and improve the health of the swollen using special imaging procedures – such as tissue. Reducing the swelling will lower your risk lymphoscintigraphy or indocyanine green (ICG) of infection, make movement easier and more fluorescent lymphography – to see if there are comfortable, and improve your wellbeing. problems with lymph fluid flow. A lymphoedema practitioner will work with you to If lymphoedema is diagnosed, it will be staged develop a treatment plan based on the severity of from 0 (least severe) to 3 (most severe). All stages swelling (the stage) and any other health conditions of lymphoedema need ongoing treatment and care. you may have. Mild lymphoedema (stages 0–1) is usually managed Who will provide treatment? with skin care, exercise and compression therapy. Lymphoedema usually requires care from a Massage therapy may also be used for stage 1 range of health professionals including a qualified lymphoedema. Moderate or severe lymphoedema lymphoedema practitioner, doctors and allied health (stages 2–3) usually needs complex lymphoedema professionals (e.g. dietitian, exercise physiologist). therapy (CLT, see page 6). Less commonly, you may have laser treatment, lymph taping and surgery. Lymphoedema practitioners – may be an occupational therapist, physiotherapist, massage Skin care therapist (may be called a myotherapist), podiatrist, It is important to keep your skin in good condition speech therapist or nurse with specialist training to prevent infections. See page 3 for tips. in managing lymphoedema. Lymphoedema practitioners assess people with lymphoedema, Exercise develop treatment plans, prescribe compression Any physical activity – such as walking and/or strength garments, and provide ongoing treatment and care. (resistance) training – can help reduce the severity of They may work as part of a lymphoedema service in lymphoedema. Water-based exercise can be helpful a public or private hospital or in private practice. as it provides support and compression. 4 Understanding Lymphoedema Aim for about 150 minutes of moderate exercise each week. Exercise may need to be modified if Types of compression therapy certain movements make symptoms worse. If you usually wear a compression garment (see box), you should also wear it while exercising. A lymphoedema practitioner, exercise physiologist or physiotherapist can design an exercise program for you. ▶ For other exercise tips, see page 3 and our Exercise for People Living with Cancer booklet. Massage therapy Manual lymphatic drainage (MLD) – This is a specialised type of massage to the affected Compression bandages and wraps area that moves fluid towards lymph nodes that used to get the fluid moving, remove the fluid are draining normally. It must be performed by and reduce swelling a lymphoedema practitioner. applied by a trained lymphoedema practitioner often used in intensive treatment (called CLT, see page 6) Simple lymphatic drainage (SLD) – This is a uses non-elastic bandages or wraps and secured simplified form of MLD, which your lymphoedema with Velcro practitioner may teach you or a carer to do daily. changed regularly as the swelling reduces may need to be worn day and night (24 hours); your Research into how well MLD and SLD work in lymphoedema practitioner will advise you managing lymphoedema is ongoing. Compression therapy Compression therapy involves applying different levels of pressure to the affected area. Bandages and wraps and compression garments (see opposite) are most commonly used in compression therapy. Intermittent pneumatic compression may also be used (see page 6). Compression can reduce and contain swelling, and soften thickened tissue. Compression garments Compression needs to be used on an ongoing used to maintain improvements basis; if stopped, the swelling will usually return. fitted by a lymphoedema practitioner to ensure correct fit and pressure gradient Who can have compression therapy? – Not self-applied (you put them on yourself) worn during the day as soon as possible after everyone with lymphoedema can have compression getting up; you may wear a lighter garment at night therapy. It can be dangerous for people with a range may be used as a standalone treatment, but of conditions, such as uncontrolled congestive heart often used as a part of CLT (see page 6) failure or uncontrolled high blood pressure. can be off-the-shelf or custom-made may be a stocking (leg), sleeve (arm), glove/gauntlet (hand), bra/singlet/vest (breast Only wear a garment if it is recommended or chest), leotard (trunk), shorts with padding by your lymphoedema practitioner or (genitals), scrotal supports (genitals), or head doctor; poorly-fitting garments can make and neck garment lymphoedema worse. Your lymphoedema available in different skin tones practitioner will show you how to put on and ask your lymphoedema practitioner whether take off the garment, and recommend aids you should wear a garment during travel and techniques if you find this difficult. 5 Understanding Lymphoedema Intermittent pneumatic compression (often called a pump) – A compression pump may be Recognising and managing infections used for people who find it difficult to move around or to perform SLD. This machine inflates and deflates People with, or at risk of, lymphoedema who is at a plastic garment placed around the affected area to are at higher risk of getting a serious risk skin infection known as cellulitis. stimulate lymphatic fluid. You may need to have MLD or SLD before using the pump. If lymph fluid can’t drain properly, bacteria can multiply and an infection The pump can be used at home but it’s important how an may start in the affected area or that a trained practitioner shows you how to use the infection sometimes more generally in the body. pump and adjust the pressure to your needs. You starts The high amount of protein in lymph can buy or hire a pump to use at home. fluid also makes it a place where bacteria is more likely to grow. Complex lymphoedema therapy (CLT) Redness, painful swelling, warm skin, For people with moderate-to-severe lymphoedema, signs of fever, and feeling generally unwell. It CLT can be used to help control the symptoms. cellulitis may help to mark the red area with a It is done in 2 phases: a treatment phase and a soft marker and check for spreading. maintenance phase. During the treatment phase, a lymphoedema practitioner provides a combination See your doctor immediately, as you may of regular skin care, exercises, manual lymphatic when need antibiotics. Treating symptoms to start early will help the recovery from drainage (MLD) and compression bandaging. treatment cellulitis. Having one episode of cellulitis increases the risk of further infections. It may take a few days or up to several weeks to reduce the swelling and then you will be fitted with It’s important to follow your doctor’s a compression garment. You will also be taught instructions when taking antibiotics how to manage the lymphoedema yourself, or – you may need to take antibiotics with the help of a partner or carer. for longer periods of time if cellulitis develops in an area affected by, or taking at risk of, lymphoedema. If you have During the maintenance phase, you will continue to antibiotics developed cellulitis several times, look after your skin and exercise regularly. You will your doctor may give you an antibiotic also continue to wear the compression garments prescription to keep on hand, so you prescribed by your practitioner to help maintain the can start on antibiotics as soon as you improvements made in the treatment phase. notice symptoms. For more information, visit lymphoedema.org.au. It is recommended that you see your lymphoedema practitioner for regular reviews, but this may vary depending on your circumstances. There is some evidence that laser treatment works well when used with lymphatic drainage and Laser treatment compression therapy. Research is still continuing Low-level laser therapy (called photobiomodulation into this treatment. or PBM) may be used to target cells in the lymphatic system. This treatment may reduce the volume of Lymph taping lymph fluid in the affected area, any thickening of Some early research suggests that a special, the skin and any pain. elasticised tape (called kinesiology tape) can help lymph fluid drain from the affected area. Your lymphoedema practitioner will use a handheld device or a larger scanner to apply infrared light The tape is different from strapping tape and is beams to the affected area. You will not feel any applied by a lymphoedema practitioner. They will tell heat during the procedure. you whether lymph taping may be helpful for you. 6 Understanding Lymphoedema Caring for the affected area Liposuction can also reduce the risk of infection. After liposuction, it’s essential to continue wearing a If possible, you should: compression garment 24 hours a day or as advised. keep cool in summer as the heat may make swelling worse – have cold showers, stay indoors during the Lymphovenous anastomosis (LVA) – This uses hottest part of the day, avoid sunburn, and drink microsurgery to repair or create a new pathway for plenty of water the lymph fluid to drain out of the area to a small wear clothing and jewellery that fits well and doesn’t put pressure on the affected area vein or another lymph vessel that is working well. tell health professionals that you have lymphoedema This technique appears to work better for people (or are at risk of lymphoedema) before having blood with early-stage lymphoedema. Further research taken, injections, blood pressure monitoring or other on the long-term effectiveness of this type of procedures – it may be safe to use the affected arm, surgery is needed. but your health professional will discuss this with you. Lymph node transfer (LNT) – This involves moving healthy lymph nodes from an unaffected Surgery area of the body to the affected limb. More research In most cases, lymphoedema can be managed with is needed to work out whether this technique is CLT (see page 6), but surgery may be an option for effective in the long term. some people when lymphoedema doesn’t respond to other treatments or you are not satisfied with Medicines standard treatment. Special types of surgery can be There is no proven drug treatment for lymphoedema used before the lymphatic system becomes badly and some medicines may make it worse. There affected and the tissues have changed a lot. Ask your is little evidence to support taking naturopathic GP or surgeon if surgery may be a option for you. medicines or supplements such as selenium to help reduce lymphoedema symptoms. Talk to your doctor To work out whether surgery is the right option for before taking any supplements or medicines to you, your treatment team will consider the extent ensure they are not harmful. of the swelling, how often you get infections, and your general health. It is best to have surgery for lymphoedema in a specialist centre. Help paying for treatment As with all surgery, there are risks involved. These Treatment for lymphoedema – including seeing include scarring, nerve damage, blood clots, lymphoedema practitioners and buying compression infection, loss of mobility in the affected area, garments – can be expensive. There are options to help with these costs: further damage to the lymphatic system, and If your GP refers you to a lymphoedema practitioner continuing lymphoedema. Most people still need as part of a chronic disease management plan, to wear a compression garment after surgery. you may be eligible for a Medicare rebate for up to 5 visits a year. Examples of surgery for lymphoedema include: Compression garment subsidy schemes are run by all state and territory governments. There are also some Liposuction – In some people, the lymphoedema federal subsidies through the Department of Veterans’ fluid changes into fatty tissue, but CLT doesn’t Affairs. These schemes cover some, or all, of the cost of compression garments. People with permanent and reduce the fat. Liposuction can remove fat from significant disability may be eligible for support through under the skin of the affected area and the limb will the National Disability Insurance Scheme (ndis.gov.au). look smaller. It should only be considered when CLT For more information, visit lymphoedema.org.au. cannot reduce the swelling. If you have private health insurance, check with your provider whether your policy covers lymphoedema Liposuction will not cure lymphoedema, but it can therapy and compression garments. make it easier to wear normal clothes and be active. 7 Understanding Lymphoedema Coping with lymphoedema Where to get help and information Lymphoedema can affect your body and mind, so it’s important to look after your wellbeing. Call Cancer Council 13 11 20 for more information and Having lymphoedema can affect how you feel about to link you with services and support groups. You can yourself (self-esteem) in several ways, including: also visit your local Cancer Council website. ACT actcancer.org Body image – You may feel self-conscious about NSW cancercouncil.com.au the swelling and how you look. Or you may have trouble finding suitable clothes and footwear, which NT cancer.org.au/nt can also affect how you feel about yourself. QLD cancerqld.org.au SA cancersa.org.au Sexuality and intimacy – You may lose interest in sex, or you may feel that any visible changes make TAS cancer.org.au/tas you less attractive and worry others will reject you. VIC cancervic.org.au WA cancerwa.asn.au Anxiety and depression – You may feel Australia cancer.org.au overwhelmed by the ongoing treatment and by the permanent reminder of having had cancer. Other useful websites Social isolation – You may avoid work and social Australasian Lymphology activities because of concern about how you look Association For more information lymphoedema.org.au or because you find it difficult to move around. about lymphoedema and to find a practitioner. Give yourself time to get used to any physical changes. You may experience a variety of emotions, Lymphoedema Association Australia including anger, anxiety and resentment. Everyone lymphaustralia.org.au To link you with support has their own way of coping with their emotions. groups in your area. Some people find it helpful to talk with family and Beyond Blue 1300 22 4636 friends, while others seek professional help from a For mental health support. beyondblue.org.au counsellor or psychologist. You may find it helpful to join a support group to talk with other people who are Cancer Council dealing with lymphoedema. Online Community cancercouncil.com.au/OC To connect with other ▶ See our Sexuality, Intimacy and Cancer and people with lymphoedema. Emotions and Cancer booklets. Acknowledgements Clinical Research Unit, College of Medicine and Public Health, Flinders University, This information is based on best practice guidelines for lymphoedema and SA, and Patron, Lymphoedema Association of Australia; Ashlynne Pointon, has been developed with help from a range of health professionals and people Consumer; Dr Cathie Poliness, Breast Surgeon, Peter MacCallum Cancer Centre, affected by lymphoedema. It was reviewed by: A/Prof Louise Koelmeyer, Director, VIC; Tara Redemski, Senior Physiotherapist – Cancer and Blood Disorders, Gold Australian Lymphoedema Education, Research and Treatment (ALERT) Program, Coast University Hospital, QLD. and Associate Professor, Macquarie University, NSW; Prof John Boyages AM, Founding Director and Honorary Professor at the ALERT Program, Macquarie Note to reader CAN6478 09/23 © Cancer Council Australia 2023 University, NSW; Dr Nicola Fearn, Occupational Therapist and Accredited Always consult your doctor about matters that affect your health. This fact sheet Lymphoedema Therapist, The Lymphoedema Clinic Wollongong, and Senior is intended as a general introduction and is not a substitute for professional Research Officer, St Vincent’s Hospital Sydney, NSW; Jennifer Gilbert, Clinical medical, legal or financial advice. Information about cancer is constantly being Nurse Consultant – Lymphoedema, Icon Cancer Centre, Chermside, QLD; updated and revised by the medical and research communities. While all care is Megan Howard, Senior Physiotherapist and Lymphoedema Physiotherapist, taken to ensure accuracy at the time of publication, Cancer Council Australia and Peter MacCallum Cancer Centre, VIC; Caitriona Nienaber, 13 11 20 Consultant, its members exclude all liability for any injury, loss or damage incurred by use of Cancer Council WA; Dr Amanda Pigott, Clinical Specialist Occupational Therapy, or reliance on the information provided in this fact sheet. Princess Alexandra Hospital, QLD; Prof Neil Piller, Director, Lymphoedema This fact sheet is funded through the generosity of the people of Australia. To support Cancer Council, call your local Cancer Council or visit your local website. Cancer Council acknowledges Traditional Custodians of Country throughout Australia and recognises the continuing connection to lands, waters and communities. We pay our respects to Aboriginal and Torres Strait Islander cultures and to Elders past, present and emerging.