LSN THE LYMPHOEDEMA SUPPORT NETWORK COPING WITH LYMPHOEDEMA FOLLOWING A MASTECTOMY OR LUMPECTOMY

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1 LSN THE LYMPHOEDEMA SUPPORT NETWORK COPING WITH LYMPHOEDEMA FOLLOWING A MASTECTOMY OR LUMPECTOMY Following a mastectomy or a lumpectomy, it is important to be aware of ways that any swelling related to your surgery can be kept under control. What is lymphoedema? Lymphoedema is a chronic swelling which can affect any part of the body, although it is most commonly seen in an arm or a leg. This is a problem that develops when the lymphatic drainage system is unable to work effectively because it has become damaged or its function is impaired. The lymphatic system plays a very important part in the way that the body functions, for two reasons: It helps to drain away fluid, proteins and waste from the tissues. It is part of the body s immune defence system against infection. Why have I developed lymphoedema? In the case of breast cancer, surgery and/or radiotherapy may cause lymphoedema. Although this treatment is essential to cure your cancer, it may also damage the lymphatic drainage system resulting in an increase of fluid accumulating in the tissues. A swelling can develop when the lymph vessels cannot keep up with the extra demands on their drainage capacity. In the early stages, the swelling is soft to the touch and may come and go. Over time, the swelling can become a constant feature and start to feel solid and thickened. In these cases the arm can feel heavy and uncomfortable and the skin can become dry. THE LYMPHOEDEMA SUPPORT NETWORK Page 1

2 What treatment is available? Although the damage to the lymphatic tissue cannot be reversed, the swelling can be reduced and controlled effectively, especially if treatment can be started as soon as it becomes noticeable. The treatment programme is made up of a number of physical therapies. These include the following: Skin Care Skin care is important to keep the skin in good condition and prevent infection (cellulitis). It is important, therefore, that you: Wash with soap-less (hypoallergenic) cleansers, then gently and carefully pat dry (do not rub) the skin. Daily application of perfume free moisturizers to the arm and hand will keep the skin in good condition and prevent dry, flaky areas of skin developing which can provide an entry site for infection. Look for any signs of redness, scratches, abrasions or cuts and if any are found, treat promptly by applying an antiseptic such as Savlon/TCP/tea tree oil. If you suspect an infection, contact your GP as soon as possible, as you may need antibiotics (see section on Cellulitis). Take extra care when cutting nails. Do not cut the cuticle. When removing body hair, use an electric razor, rather than a blade razor, to reduce the risk of cutting your skin. Depilatory creams may also be used, but be diligent about skin sensitivities/ allergies. Try to avoid any trauma/injury to your arm/hand, so be careful in the garden, kitchen, etc. For more information, see the LSN Skin Care fact sheet. Mastectomy/lumpectomy fact sheet Exercise Appropriate exercise and relaxation play a very important role in keeping your lymphoedema to a minimum. Exercise also helps to maintain good posture and balance and to keep joints/muscles as flexible as possible. Many of you will have been given specific arm/hand exercises following your breast cancer surgery and these are also very beneficial for lymphoedema. Try and perform these exercises on a daily basis. Your lymphoedema practitioner will also advise you on individual arm/hand exercises to help move the swelling out of the affected area. Swimming, Yoga and Tai Chi are also very beneficial forms of controlled exercise that will help not only your arm, but also your physical well-being. For more information, see the LSN Recreational Exercise With Lymphoedema fact sheet. THE LYMPHOEDEMA SUPPORT NETWORK Page 2

3 Massage Manual Lymphatic Drainage (MLD) therapy is a gentle and specialised form of massage, carried out by specially trained practitioners. MLD consists of very light, rhythmic and pumping hand movements to stretch the skin and stimulate the lymphatic system. The aim of MLD is to redirect lymph fluid away from swollen areas towards the healthy lymphatics in unswollen areas. Lymph fluid will then drain by normal routes back into the circulation. MLD is particularly helpful when swelling involves areas of the body where compression garments cannot easily be worn, such as the armpit, breast, chest, back and abdomen. MLD helps reduce hardness of the tissues (fibrosis) and can improve the condition of scars. MLD works best when used as part of a treatment programme and is not a cure in itself. However, it is not always possible to obtain MLD on the NHS. You may wish to use a private MLD practitioner. The LSN office has a list of qualified MLD practitioners in the UK. Some of you will be shown a simplified version of this technique called Simple Lymphatic Drainage (SLD). This will enable you (or your carers) to perform this massage at home and enable you to continue the treatment more often. For more information about this massage therapy see the LSN Manual Lymphatic Drainage Therapy fact sheet. Compression This part of the treatment depends on the severity and nature of your swelling. In severe cases, for example when your arm is very large or uneven in shape, a course of Multi-Layer Lymphoedema Bandaging (MLLB) using several layers of cotton bandages and padding material may be recommended by your practitioner. For arms that are less swollen and have a good shape, an elastic compression sleeve may be fitted. These are therapeutic garments, especially made to help reduce your swelling and keep it under control. They are also used after a course of MLLB. The range of these elastic compression garments is enormous they come in a variety of styles and there are different varieties more suitable to some swellings than others. Your therapist will be able to guide you on the best possible garment to help reduce and/or maintain your swelling. These compression garments are the main-stay of treatment they should be worn during the day, particularly during exercise, and removed at night. For more information see the LSN Multi-Layer Lymphoedema Bandaging (MLLB) fact sheet. THE LYMPHOEDEMA SUPPORT NETWORK Page 3

4 What is cellulitis? Mastectomy/lumpectomy fact sheet Cellulitis is a sudden, non-contagious infection of the skin, characterized by redness, swelling and heat that is usually accompanied by pain and tenderness. People with lymphoedema following a mastectomy/ lumpectomy are particularly susceptible to cellulitis because the lymphatic system is damaged (due to surgery and/or radiotherapy) and does not function adequately enough to fight infection. You may begin to feel unwell, as if flu is starting. Symptoms can include fever, shivers, muscular aches and pains, nausea/vomiting and headache, etc. The swollen area then usually develops a rash or becomes red, hot and tender to the touch. Swelling may dramatically increase and pain may occur in the swollen area or the armpit. Cellulitis may follow an event such as an accidental scratch or cut to the skin, or an insect bite, but in many cases the cause is not obvious. If cellulitis occurs, it is important to contact your GP immediately, as you will need antibiotics. For more information see the LSN What is Cellulitis? and Management of Cellulitis in Lymphoedema fact sheets. How else can I help myself? Heat increases the likelihood of swelling in the arm. Try to avoid extremes of heat such as very hot baths or showers, saunas, Turkish baths or any kind of hot mineral or mud bath. During the summer months and when you are on holiday, try not to sit in the sun and avoid sunburn by covering your affected arm with a good quality sun block (SPF 15 or higher) and wear light weight clothing at all times. For further information see the LSN Holidays and Travel fact sheet. In everyday activities try to: Use protective gloves for gardening, cooking and dirty household duties to protect the hand. However minor they may seem, treat any cuts or breaks in the skin with an antiseptic cream, as soon as they occur. Take care when ironing, to avoid burns. Use a thimble when sewing. Avoid scratches. Remember that these can occur quite unexpectedly from pets, rough surfaces, brambles or even the car door. Use an insect repellent to avoid insect bites on the affected arm as these can lead to inflammation and infection. THE LYMPHOEDEMA SUPPORT NETWORK Page 4

5 Carry shoulder bags on the unaffected side. Avoid lifting heavy objects, including small children, and avoid extreme arm stretching. When possible, keep your arm moving when walking or sitting implement your exercises to keep the lymph moving, and prevent the limb hanging down support it on a pillow at rest, or in a pocket when walking. Excessive pressure can exacerbate or trigger lymphoedema. Whenever possible, avoid blood pressures, injections or blood samples being taken from your affected arm. However, this may not always be possible during a course of chemotherapy. The legs may be used as an alternative for blood sampling or blood pressures, and the abdomen/ buttocks maybe used for injections in those people suffering from bi-lateral lymphoedema. Similarly, it is best to avoid having acupuncture on the affected side. Classical or Swedish massage can be very firm and cause excessive pressure on the affected arm, so although it is fine for massage to be carried out on other parts of the body, it is best avoided on the affected, or at risk, arm. Manual Lymphatic Drainage (MLD) carried out by a qualified practitioner, can, however, be helpful. Watches, bracelets, rings and other jewellery can be worn on the affected arm but should not be tight. Try to make sure that they have adjustable fastenings so that you can loosen them if necessary. Tight clothing can be uncomfortable in an area where there is swelling. Broad straps on bras are less likely to cut in (broad attachments can be purchased quite easily, or use old shoulder pads) and adjustable cuffs and belts will ensure that they do not become tight. If you wear a heavy breast prosthesis, discuss the most appropriate support with the appliance officer at the hospital. Pain and Lymphoedema Lymphoedema is not usually painful the arm may ache, feel heavy or uncomfortable, the skin feel taught, or tight but intense feelings of pain are most unusual (except during an attack of infection). However, pain in the arm/shoulder/hand may occasionally become a problem, triggered by a variety of things such as muscle strain from over exercising, or nerve pain as a result of scarring from radiotherapy/surgery. Any new and persistent pain should be reported to your therapist who will assess the problem and refer you to other Health Care Professionals as necessary. THE LYMPHOEDEMA SUPPORT NETWORK Page 5

6 Contributors Professor Peter S. Mortimer, Consultant Dermatologist at the Royal Marsden and St. George s Hospitals, London. Mary Woods, Senior Clinical Specialist on behalf of the Lymphoedema Services, Royal Marsden Hospital NHS Trusts, Sutton, Surrey with Clinical Nurse Specialists Jennie Gilbert, Denise Lovis and Jenny Smith. Denise Hardy, Clinical Nurse Specialist Lymphoedema, Kendal Lymphology Centre, Cumbria LSN Nurse Advisor LSN Trustees Reviewed and updated 03/2006 THE LYMPHOEDEMA SUPPORT NETWORK Page 6

7 LYMPHOEDEMA IS THE SWELLING OF THE LIMBS AND BODY DUE TO THE ACCUMULATION OF LYMPH. Lymphoedema is not well-documented and is far more common than the medical profession generally realises. The Lymphatic System Lymph is a colourless fluid which forms in the body. It normally drains back into the blood circulation through a network of vessels and nodes. Lymph nodes act as filter stations. They play an important part in the body s defence against infection by removing excess protein, dead or abnormal cells and bacteria. Why does lymphoedema occur? If the drainage routes through the lymphatic system become blocked or damaged, lymph accumulates in the tissues and swelling (oedema) occurs. Unlike other oedemas, lymphoedema can lead to changes in the tissues such as fibrosis (hardness) and an increased risk of infection. The swelling becomes even more difficult to control. Primary Lymphoedema is usually determined from birth and may be due to underdevelopment of the lymphatic system. It can affect infants or children and men or women at any age. Secondary Lymphoedema can occur in the treatment of cancer following surgery or radiotherapy. It can also occur as a result of infection, severe injury, burns or any other trauma. EARLY DIAGNOSIS AND EARLY TREATMENT ARE VITAL TO CONTROL LYMPHOEDEMA. Become a member of the LSN see next page. THE LYMPHOEDEMA SUPPORT NETWORK Page 7

8 The LSN is a registered charity founded in It provides vital information and support for people with lymphoedema, while working towards the availability of better national resources for lymphoedema treatment. The LSN provides its members with: A telephone Information and Support line. Quarterly newsletters. Current information on lymphoedema, research and treatment. Fact sheets. Website. Self-help videos/dvds. The LSN relies solely on membership subscriptions and donations. Please help us to continue our vital work by becoming a member and/or making a donation. APPLICATION FOR MEMBERSHIP Mr, Mrs, Miss, Ms. SURNAME First names Address Post Code Telephone (Home) (Work) I have Lymphoedema I am a Health Care Professional Other (please specify) I would like to join the LSN and enclose a cheque made payable to the LSN for Annual UK subscription Annual overseas subscription Donation to support the work of the LSN of Total Please send to: The Lymphoedema Support Network St Luke s Crypt, Sydney Street, London SW3 6NH THE LYMPHOEDEMA SUPPORT NETWORK Page 8

9 Fact sheets available: Breast oedema The management of cellulitis in lymphoedema Prevention of upper limb lymphoedema Recreational exercise with lymphoedema Manual Lymphatic Drainage Therapy Skin care for people with lymphoedema The use of compression garments in lymphoedema management Holidays and travel Prevention of lower limb lymphoedema For information and help, please contact The Lymphoedema Support Network St Luke s Crypt, Sydney Street, London SW3 6NH Telephone: (Information and Support) (Administration) Facsimile: adminlsn@lymphoedema.freeserve.co.uk Website: Registered Charity No Patron Zoë Wanamaker CBE THE LYMPHOEDEMA SUPPORT NETWORK LSN 03/2006 THE LYMPHOEDEMA SUPPORT NETWORK Page 9