University College Hospital Reducing the risk of lymphoedema Information for patients with head and neck cancer
2 If you need a large print, audio, easy read, braille or translated copy of this leaflet, please contact us on 020 7380 9088. We will try our best to meet your needs. Contents Purpose of this leaflet 3 What is lymphoedema? 3 What is the lymphatic system? 3 Who may be at risk of developing lymphoedema? 4 How will I recognise lymphoedema? 5 What can I do to reduce the risk of lymphoedema? 6 What should I do if I have swelling? 7 Skin infection and lymphoedema 7 Early treatment of infection 8 Gentle head and neck exercises 9 Contact us 15 Where can I find further information about lymphoedema? 16
3 Purpose of this leaflet This leaflet aims to: explain what lymphoedema is give information and advice on how to reduce the risk of developing lymphoedema offer information on what to do if you have swelling in your head, face or neck. What is lymphoedema? Lymphoedema is a build-up of fluid (lymph) in the tissues which can cause swelling, skin and tissue changes. This can happen if the lymphatic system is not working properly, and causes lymph that would normally be drained away to build up. Head and neck cancer, or the treatment for it, can damage the lymphatic system. This damage prevents the lymphatic system from collecting and draining lymph properly. This can cause swelling and skin and tissue changes in the affected area. This type of swelling is called secondary lymphoedema. What is the lymphatic system? The lymphatic system is part of your body s drainage system and is an important part of your immune system. The lymphatic system helps to fight infection, cleanse tissues and keep a balance of fluids in your body. The lymphatic system (lymphatics) is made up of lymphatic organs, lymph nodes (glands) and lymph vessels that run throughout your body.
4 Fluid is constantly moving in the body, from the blood vessels to the tissues, then into the veins and lymphatics, then back to the heart. Once in the lymphatic vessels, the fluid is called lymph and includes waste materials, large cells and molecules such as proteins. The lymph travels within lymphatic vessels to the lymph nodes. Lymph nodes filter the lymph. If lymphatic vessels or nodes become damaged or are removed the lymphatics cannot work fast enough, so fluid can build up in the tissues causing swelling in the affected body area. Who may be at risk of developing lymphoedema? With some cancers of the head and neck it is necessary to surgically remove certain lymph nodes (glands), lymphatic vessels as well as the tumour itself. If lymph nodes are removed this is called a lymph node dissection. Radiotherapy treatment can also cause damage to the lymphatic nodes and vessels. As part of your recovery from surgery or radiotherapy, your body will find ways of compensating for damage from the surgery or radiotherapy. For example, the remaining lymphatic vessels can work harder. Over time they may develop new routes for the lymph to drain. Lymphoedema does not always happen. No-one can tell if you will develop lymphoedema or not, because each patient s lymphatic system is unique and will recover from the cancer treatment differently.
5 How will I recognise lymphoedema? Not all swelling is lymphoedema. You may have swelling after infection or surgery that goes away after a few weeks. It is only when the lymphatic system is damaged and cannot recover that lymphoedema occurs. The swelling may appear in different ways depending on the treatment given and damage to the lymphatic system. The swelling can be in one or more areas of the face, head and neck; such as the eyelid(s), beneath the eye, the cheeks, the lip, tongue, beneath the chin or the neck area. Surgical scars alter the way lymphatic fluid drains and this may cause a build-up of fluid behind the scar. Patients who have had radiotherapy treatment may find they have swelling in the treated area. The swelling usually improves in a few weeks. Radiotherapy can make it harder for lymph to drain, this is because radiotherapy causes the skin and tissues to become firmer, thinner and less elastic to touch. The skin and tissue changes can make it harder for lymph fluid to drain. Once swelling in the tissues has started to develop, the skin and tissues harden (this is called fibrosis) or become fatty.
6 What can I do to reduce the risk of lymphoedema? Here are some helpful tips: If you notice some swelling in your head or neck in the morning, it may be helpful to raise the head of the bed on 4-inch blocks (you can buy this at disability or hardware stores). Or you can sleep with an extra pillow (as long as it does not cause your head to slump forward). Try not to fall asleep in a chair that allows your head slump forward Take care to cleanse the skin of your head and neck on a daily basis using gentle products. Apply a non-perfumed moisturiser to your face and neck daily. Take care when shaving, use an electric shaver rather than a wet shave with a razor to reduce the risk of cutting your skin or causing infections of your hair follicles. Avoid certain treatments to your face, such as acupuncture, electrolysis, waxing, or bleaching. Do not have a tattoo in the affected area. Wear a sun hat when exposed to extreme sunlight. Wear high factor sunscreen to prevent sunburn (factor 30 or above). Wear sunglasses to protect eyelids in extreme sunlight. Apply moisturiser when exposed to extreme cold or wind to prevent your skin from drying. Use lip salve to protect your lips from chapping. Try to avoid wearing very tight collars, ties or jewellery around the neck which may restrict lymphatic drainage through the skin. Avoid extreme heat of saunas and steam baths.
7 Take good care of teeth, mouth and gums and check them regularly. Go to the dentist regularly for dental checks. Gentle exercise and movement helps lymphatic drainage. There are some gentle exercises toward the end of this booklet that you may find helpful. What should I do if I have swelling? In the first few days or weeks after surgery or radiotherapy it is common to develop swelling. This swelling will usually improve gradually over a few weeks. If, after this time (usually three months) the swelling persists, your doctor or clinical nurse specialist may refer you to the Lymphoedema Clinic for assessment, advice and treatment if necessary. Early treatment is very important, please contact your GP or clinical nurse specialist (CNS). Skin infection and lymphoedema It is important for people who are at risk of developing lymphoedema to avoid getting skin infections in the head and neck treatment area. Even the smallest wounds can allow bacteria to enter the skin. If you cut or scratch your face or neck, notice any spots, pimples, skin irritation or insect bites on your skin, clean your skin. Apply an antiseptic cream and check that it is healing well. If you notice any signs of inflammation, such as fever, swelling, redness, pain, heat, rash or blistering of the skin, you may have a skin infection. Seek medical advice straight away as you may have cellulitis (skin infection), and you may need to start treatment with antibiotics immediately. If your GP surgery is closed, go to an NHS Walk-In Centre or A&E department.
8 Early treatment of infection Early treatment of infection with antibiotics is very important for the following reasons: The infection could make you feel unwell. If the infection is severe you may need to come into hospital for treatment with intravenous antibiotics Infection damages the small lymphatic vessels which can increase the size of the swelling. Your skin texture may change over time if you have repeated infections and make the lymphoedema harder to treat effectively If you have repeated infections, you may be told to have or carry antibiotics with you to take at the first sign of any infection. You will also need to take the antibiotics with you if you are going away from home or travelling abroad. If you are prescribed a course of antibiotics to treat any infection, it is important that you finish the course of antibiotics. If you have repeated infections (cellulitis) two to three times a year, you may be prescribed a low dose of daily antibiotic.
9 Gentle head and neck exercises The exercises will help you to improve and maintain range of movement and muscle strength, which will help to promote lymphatic drainage. You must do all sections of the exercises. Repeat all the exercises 5 to 10 times, 1 to 2 times a day. A CNS should go through these exercises with you. Please ask if you are unsure. Before you start Maintain good posture when doing the exercises: sit or stand tall with your shoulders back and relaxed. It may be helpful to look at yourself in a mirror whilst doing the exercises. Do the exercises slowly, smoothly and gently, take time to do these well and try not to rush them. Rest for a short period of time between exercises. Wear comfortable clothes when you do the exercises. It is important that you do some exercises every day even if you need to reduce how many you do and the number of times you do it. You will probably feel a stretching sensation when you do the exercises. Work within comfortable limits, without pain. Listen to your body and if you feel pins and needles or pain while doing any of the exercises you must stop. If the discomfort does not improve seek advice from your doctor or healthcare professional.
10 Neck exercises 1. Head tilt a. Tilt your head towards one shoulder until you feel the stretch on the opposite side b. Hold 2 seconds c. Slowly come back to the start position d. Repeat on the other side 2. Head turns a. Turn and look over one shoulder as far as you can. b. Hold 2 seconds. c. Slowly come back to the start position d. Repeat on the other side Remember to keep your shoulders facing forward and do not turn your body while you do the exercise.
11 3. Chin to chest a. Bend your neck forward as far as you comfortably can b. Hold for 2 seconds c. Slowly come back to the start position Shoulder exercises 1. Shoulders up and down a. Drop your shoulders away from your ears b. Relax c. Bring your shoulders to your ears d. Relax
12 2. Upper back stretch a. Hug yourself b. Pull your shoulders inward, feel the stretch across your shoulder blades. c. Relax 3. Shoulder rotation a. Rotate your shoulder forward b. Rotate your shoulders backward
13 4. Chest stretch Do this exercise when lying down to support your back a. Place your hands behind your head b. Bring your elbows together in front of you c. Pull elbows back toward the bed or floor d. Hold for 3 seconds Mouth exercises 1. Open and close your mouth 2. Blow kisses 3. Blow out imaginary candles 4. Blow slowly 5. Say the vowels in an exaggerated way 6. Make an exaggerated smile 7. Chew sugar-free chewing gum to strengthen your cheek muscles
14 Jaw exercises 1. Jaw side to side a. Slide your lower jaw to the right b. Come back to the start position and slide it to the left. To make it more challenging you can adjust the speed from slow to fast or the other way around. 2. Jaw forward a. Push your lower jaw forward b. Relax
15 Contact us The Lymphoedema Team at UCLH Referral to the lymphoedema service needs to be made by a health professional, preferably your Head and Neck Clinical Nurse specialist or Doctor, after assessment of causes of the swelling. Contact details: The Lymphoedema Service Cancer Division 1st Floor Central 250 Euston Road London NW1 2PG Telephone numbers General Enquires: 020 3447 3925 Fax: 020 3447 9055 University College Hospital Macmillan Cancer Centre Huntley street, London WC1E 6AG Switchboard: 020 3456 7890 or 0845 1550 500 Website: www.uclh.nhs.uk
16 Where can I find further information about lymphoedema? If you wish to find out more information about lymphoedema you can contact: Lymphoedema Support Network (LSN) St Luke s Crypt Sydney Street London SW3 6N1T Information and support: 020 7351 0990 Email: adminlsn@lymphoedema.freeserve.co.uk Website: www.lymphoedema.org/lsn The LSN is a patient organisation providing advice, a range of information, DVD s and fact sheets about lymphoedema and holds support groups around the UK
17 The Macmillan Support and Information Centre at the University College Hospital Macmillan Cancer Centre The Support and Information Specialists welcome all people with cancer and/or haematological conditions and their families and friends. We are here to listen, talk things through, provide emotional support and information. We run a wellbeing programme of workshops and courses to help manage the impact cancer and haematological conditions on your life. We can also refer to the wig specialist, dietician, complementary therapies, welfare and benefit and the counselling and psychology team. (Your CNS can also refer you directly to these services). You do not need an appointment or referral to visit us, you can come in anytime between 9:30am and 5pm Monday to Friday. We are located on the ground floor of the University College Hospital Macmillan Cancer Centre, Huntley Street, London, WC1E 6AG. Telephone: 020 3447 8663 Email: supportandinformation@uclh.nhs.uk Website: www.uclh.nhs.uk/msis
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Publication date: October 2007 Last review date: November 2016 Next review date: November 2018 Leaflet code: UCLH/CS/H&N/LYMPHRISK/1 University College London Hospitals NHS Foundation Trust