Further information: Lymphoedema management & treatment

Written by Jan Simmons Macmillan Lymphoedema Project Lead, The NLCN www.nlcn.nhs.uk/ProServLymph

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Contents

Skincare

Further general advice for all patients with or at risk of lymphoedema is contained in the ‘Preventative advice’ section

Preventative skincare advice for those at risk of developing lymphoedema following cancer treatment:

  • It is recommended that people who have had lymph nodes removed as part of their cancer treatment care for the skin in the ‘at risk’* area through daily moisturising with a neutral moisturiser such as Aqueous, Diprobase or E45 cream. Moisturising the skin ensures daily inspection of the skin to check for any cuts/insect bites or signs of infection and prevents against dry and cracked skin which may introduce infection
    * the ‘at risk area’ could be, for example, if lymph nodes have been removed under the arm following surgery for melanoma (skin cancer) treatment, the patient should use a moisturiser and inspect the skin every day on the arm, chest & back region
  • If a skin infection occurs in the limb/area where lymph nodes have been removed antibiotics as stated in the ‘National Consensus for infection in lymphoedema’ should be started (www.thebls.com/concensus.php ). These antibiotics should also be used in patients without any signs of swelling. This is because the lymphatic system may be slow to respond to infection in the usual way as some of the lymph nodes which filter bacteria may be missing or damaged and the drainage system has been disrupted. Symptoms of infection can worsen and make the person very unwell quickly. The correct antibiotics are needed to treat and prevent spread of infection. If the person is unwell with a fever and the infection is severe admission to hospital may be required so that antibiotics can be given intravenously (through a vein). Cellulitis may present in the limb or surrounding area (i.e. following breast cancer surgery infection may occur in the arm, back or chest)

For symptoms of cellulitis see ‘Infection’ section furthur on

SKINCARE: general advice for those with lymphoedema

  • Caring for the skin when lymphoedema is present prevents against skin changes and infection. Skin infections (cellulitis) and fungal infections (such as athletes foot) affecting the nails and digits of hands and feet are common
  • People with lymphoedema are advised to use neutral (neither perfumed, cosmetic nor which contain Lanolin which may cause allergic reaction) moisturisers every day on the affected area. Aqueous, Diprobase or E45 creams are useful to prevent dry & cracked skin which may introduce infection

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Infection: Signs of cellulitis : skin infection

  • The affected (or neighbouring) area will be red and hot to touch
  • There may or may not be an obvious cause of infection, such as insect bite or a scratch.
  • There may or may not be symptoms of fever (temperature) and chills. If the person feels unwell and has a temperature then they must see their GP or go to their accident and emergency department immediately. Infection can spread fast and make the person very ill very quickly (septic shock) in those who have a high fever and flu like symptoms.

Medical attention should be sought at the first signs of infection and antibiotics started immediately. The patient should rest the affected limb and observe that the area is not getting any worse or they may need to be admitted to hospital for intravenous antibiotics. If once antibiotics have started and the person continues to feel unwell with a temperature, or if the redness in the affected area is spreading the patient should return to their doctor or accident and emergency urgently. Some people find it helpful to mark the area with a non permanent felt tip pen so they can monitor the red area.

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If there is cellulitis (skin infection) present, to prevent the infection from spreading around the body, the person with lymphoedema should NOT:

  • Wear their compression sleeve/stocking/garment
  • Carry out any exercises or self drainage massage
  • Have any intensive lymphoedema treatment (MLD/bandaging/Kinesio taping)
  • There has been much research regarding antibiotic therapy for skin infections in lymphoedema so that we generally know what organism has caused the infection, thereby making the treatment easier to ascertain. The recommended guidelines can be found at: www.thebls.com/concensus.php
  • It is advised that people with lymphoedema should keep a supply of antibiotics at home and take a course of treatment with them when going on holiday in case of infection
  • Some patients suffer with repeated attacks of cellulitis and it is safe and common practice after assessment by a doctor or lymphoedema specialist, for such patients to be given daily low doses of prophylactic antibiotics for 6 months or longer periods. Some patients remain on prophylactic antibiotics for months to years to gain adequate control over repeated bouts of infection

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Skin changes due to lymphoedema

  • Skin nodules, new skin growths which often have a cauliflower or wart like appearance, known as hyperkeratosis and papillomas can occur. These skin changes are common in the more severe forms of lymphoedema or when lymphoedema has been present for some time. In severe skin changes, intensive treatments such as bandaging using various materials and dressings are used to soften and improve the skin condition
  • The leaking of lymph fluid from the affected area, known as lymphorrhea, can occur. This situation requires an experienced lymphoedema practitioner to assess and plan treatment as soon as possible. Signs of infection need to be carefully observed in this situation as the skin is leaking a new infection can easily penetrate the skin breaks. Nursing care may be needed for sterile dressings & bandages to be applied to the leaking area and changed frequently
  • Depending on the cause of the lymphorrhea multi layered lymphoedema bandages can be applied to the area which mostly halts the leaking in 24 to 48 hours. Bandages can be applied with the usual or a lighter pressure according to the patient’s physical condition. Follow up care and monitoring of the condition is important as lymphorrhea may start again and need further treatment. Generally patients may be fitted for compression garments following bandaging treatment for lymphorrhea to prevent the leaking reoccurring
  • Lymph cysts may develop which can also leak lymph fluid, which also requires the expertise of a specialist lymphoedema practitioner to assess and plan treatment best suited to the patient. In some cases surgery to remove the cyst may be appropriate if the cysts are particularly troublesome. This must be carried out by a surgeon with experience in this field and the patient followed up by a lymphoedema specialist and antibiotic advice may be required.

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THERAPEUTIC EXERCISE & POSITIONING OF SWOLLEN LIMB(S)

Preventative advice following treatment for cancer:

  • Gentle exercise and positioning can help to support lymph flow in the at risk area. Following lymph node surgery specific exercises are given to some patients and these should be followed during the post op phase. The exercises demonstrated on the following pages are suitable for use to encourage lymph flow and are useful to accommodate into daily life.
  • NB. If unsure, all patients should check with their doctor before embarking on any exercise regime

Further information regarding prevention of lymphoedema following cancer treatment can be found in the prevention section.

For people with lymphoedema

  • Exercise and deep abdominal breathing increases lymphatic flow. Exercises are prescribed for the person with lymphoedema which stimulate lymph flow by using the joint and muscle pumps i.e. bending/stretching
  • People with lymphoedema should be encouraged to use their affected swollen arm or leg normally but take care not to strain the limb. For example, carrying heavy shopping or strenuous physical activity that may cause strain or injury is not recommended, but using the arm to carry out normal light daily activities and exercise is encouraged. Lymph flow relies on movement and the pumping of the muscles & joints
  • All patients with lymphoedema should incorporate exercise into their daily routine and build up their regime gradually. Water exercises are particularly helpful as the water can be a buffer against strain/injury
  • It is recommended that the compression garments be worn during exercise (not while swimming as this can damage the materials) to support the limb and further encourage lymph drainage
  • If swelling is affecting the lower body it is recommended for the patient not to sit or stand for long periods – rest with legs on footstool or in bed/sofa and intermittently move and walk around to encourage lymph drainage
  • It is recommended not to over elevate the legs or arms if there is swelling present i.e. raising the end of the bed more than 10 degrees or holding the arms above the head for long periods of time. This may cause the swelling to spread to neighbouring parts of the body and could cause complications in people with high blood pressure or heart conditions
  • Support a swollen arm under a pillow when sitting or lying for long periods.

Recommended exercises for lymphoedema are shown on the next pages. NB these exercises are copyright and belong to David Knight BSc Hons Osteopathy.

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Knights Osteopathy
Lymphoedema

Knight's Osteopathy
Written by David J Knight
BSc. Hons Medical Biochemistry.
G.O.S.C Registered Osteopath

USE YOUR MUSCLES AS PUMPS TO REDUCE YOUR SWELLING

Before you Start

  • Always pump the muscles weraing external Support whenever possible
  • Movements should be slow and rhythmical with little and often rest periods
  • Movements should be made only in the pain free range - Dont force it
  • When moving feet or hands the limb should be supported on a pillow or cushion

Start

We always start with stimulating the muscles centraly around the torso to activate the deep lymph glands so we can more effectively drain the limbs and improve the flow from the extremites to the body

  • Abdominal Breathing - This is very important as when we breathe our lungs suck fluid back towards the body

Sit or Lie in a comfortable position and gently rest you hands on your stomach. Taking a normal regular breath, as you breathe in your stomach rises as do your hands and gently fall as you breathe out. Do this for 7 regular breaths

This can be done anywhere and at anytime and should become a daily habit!

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Leg Oedema
Low back and Hips

Lying on your back with the knees bent and the feet on the bed

  • On breathing in everything is relaxed then as you normally breathe out press the small of your back into your matress. (If you find this difficult place one hand in the small of your back so you can feel the pressure as you flatten on breathing out). Relax as you breathe in and repeat 5 times.
  • Tighten your buttocks, hold for the count of 3 relax, repeat 5 times.
  • With your shoulders still and the legs straight with the feet at right angles try to stretch the Right foot as if to lengthen the leg hold for the count of 3 relax and repeat with the LEft. Repeat 5 times.
  • Straiten one leg hold for the count of 3 bend the knee back to the starting position. Repeat with the other leg 5 times

The following Should not be attempted unless you are fully mobile and are able to do the previous exercises without difficulty

  • Bend the knee to the chest as shown and gently carry out circular movements 5 times clockwise and anticlockwise from the hip.
  • Lift you knee as high as you can with your foot remaining on the bed. Allow the leg tp slowly fall first outwards as far as comfortable hold for the count of 3, return to the neutral for the count of 3 then inwards as far as comfortable for the count of 3. Repeat 5 times.
  • Lie on your back, hips and knees bent, slowly do bicycling movements with the legs for 30 seconds, relax for 1 minute and repeat.

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Foot and Ankle.

Lying flat on your back with the legs straight pillow under the calf's.

  • Pull the foot towards you from your ankle holding for the count of 3 and relax. Repeat 5 times each side.
  • Move the foot up and down at the ankle. 5 times each side
  • Circle the ankle 5 times one direction and then the other.
  • Turn the foot in and out at the ankles. 5 times each side.
  • Curl up the toes and stretch them out. 5 times each side.

The movements above can also be done sitting (i.e. when at work and best results are when undertaken on a little and often basis)

Forearm and Elbow.

Sitting confortably with the arm Supported on the arm of a chair or on a table.

  • With palm facing towards the ceiling gently bend and straigten the elbow. Repeat 7 times.

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Hand and Wrist

Sitting with the forearm supported on a pillow or cushion with the hand free.

  • Circle the wrist slowly in one direction 5 times and repeat in the reverse direction 5 times.
  • With the palm facing the floor lift the hand back as far as comfortable and then bend the hand down. Repeat 5 times.
  • Make a fist an then straighten the fingers as far and as wide as possible. Repeat 7 times.
  • Touch the tip of the thumb to the tip of the little finger and then spread the fingers out. Repeat on each finger.

(The above can easily be done in the working enviroment especially useful in an offic, little and often throughout the day especially if you work with computers)

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Arm Odema

Sitting in a relaxed position:
Chest, Neck and shoulder area.

  • Gently raise the shoulders towards the ears and slowly push the shoulders down as far as they will go. Repeat 5 times.
  • Pull your shoulders back sticking your chest out as as possible and then relax your shoulders back to a neutral position. Repeat 5 times.
  • Gently Circle the shoulders backwards. Repeat 5 times.
  • As you breathe in Lift both arms out to the side and then touch the hands above your head slowly. Repeat 5 times.
  • Breathing out with your arms resting on your stomach slowly bend your back forwards, then as you breathe in slowly straighten your back as you raise your arms above your head. Repeat 5 times.
  • With your arms resting iin your lap gently bend the head slowly to the Right and then slowly to the left. Repat 4 times.

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COMPRESSION (HOSIERY & MULTI LAYERED LYMPHOEDEMA BANDAGING: MLLB)

Written by Jan Simmons Macmillan Lymphoedema Project Lead, The NLCN www.nlcn.nhs.uk/ProServLymph

Preventative advice following treatment for cancer:

  • People who have had lymph nodes removed as part of their cancer treatment do not need to wear compression sleeves or stockings on a daily basis or to exercise, if they do not have any swelling present. If worn this may actually cause swelling to start. This is due to the lymphatic system ‘getting used’ to compression and then only being able to function properly with compression garments in place
  • Some people following cancer treatment are deemed more at risk of developing lymphoedema (see preventative section for more details) and for these people it is sometimes advised they wear a compression garment(s) when going on a long haul flight (for example, over 6 hours). For example, people who have been treated for breast cancer may be able to obtain an armsleeve or a good fitting ‘tubigrip’ ™ to wear during the flight. Those at risk of leg lymphoedema may find ‘flight socks’ useful to wear. It is important to have the correct size in these items and an advisor in the pharmacy should be able to assist with this and this should be assessed on an individual basis

The use of compression in lymphoedema

  • Compression garments are one of the main elements of long term lymphoedema maintenance. Compression garments are available in a range of pressure (known as ‘class’) and styles to wear anywhere on body (i.e. armsleeves, stockings, underwear garments). A full assessment and physical examination must be carried out before any patient is fitted with compression.

Picture shows a style of full length compression stocking incorporating shorts for comfort – picture with kind permission from UCLH NHS Foundation Trust

  • The compression garments are worn generally only in the day time and removed at night. Garments are available in a range of colours, styles and fabrics. The style, thickness of fabric and level of compression will be prescribed according to the patient’s clinical condition.
  • If the patient has difficulty putting on their armsleeves or stockings there are appliances to help which can be prescribed or purchased to make this easier
  • A prescription charge is applied for compression hosiery, some bandaging items and other aids used in the management of lymphoedema. Patients are charged per item unless they meet the NHS criteria for free prescriptions www.dh.gov.uk/en/Policyandguidance/Medicinespharmacyandindustry/Prescriptions/NHScosts/DH_4049391 Please note: due to recent change in legislation, patients who have developed lymphoedema as a result of their cancer are now eligible for free compression garments
  • Lymphoedema clinics, specialist nurses/other health professionals including GP’s can now prescribe a range of these items
  • Compression in the form of multi layered lymphoedema bandaging (MLLB) is used during intensive treatment for lymphoedema. The daily application of padding & bandages is used. This is not the same as ‘4 layer bandaging’ used in vascular or leg ulcer dressings. The aim of this treatment can be to encourage lymphatic drainage, reduce the size and volume of the area, improve the skin and reduce fibrosis following cellulitis or to restore the shape of the area. Compression garments can be easily fitted and are more comfortable following the treatment. When the bandages are in place they provide a working and resting pressure when the limb is moved, and so ‘massages’ the skin and tissues beneath them

Picture - multi layered bandaging (MLB) of arm

  • The bandages are applied daily and kept on for 24 hours before removal and re application so that skincare can be given and the pressure of the bandages maintained. Patients are prescribed exercises to carry out with bandages in place. Treatment with bandaging can last for one to four weeks, or longer, depending on the severity of the patient’s condition
  • Compression garments are usually fitted towards the end of the treatment and must be worn immediately the bandaging treatment has finished. Some therapists may recommend garments to be worn at night or for the patient to apply compression bandages over the top of the garments following treatment

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MANUAL & SELF (SIMPLE) LYMPHATIC DRAINAGE

Manual Lymphatic Drainage (or MLD) is a form of light ’massage’. The techniques used stimulate lymph nodes that drain the affected part of the body and direct lymph flow around the damaged area, whilst encouraging drainage in the congested area. MLD is often used in combination with MLLB ( this is sometimes called Compete Decongestive Therapy or CDT explained below). Internationally there are different terminologies used to describe this combination treatment.


PLEASE NOTE:

There are different schools of training and MLD techniques and it is worth checking that the practitioner has a recognised qualification. The website MLD UK (www.mlduk.org.uk/) has listings of recommended training and registered therapists for lymphoedema treatment in the UK. If the lymphoedema is as a result of previous cancer treatment or active cancer it is best to check with the patient’s cancer consultant that they are happy for treatment to be given, and that the therapist has good knowledge of the physiology and treatment of cancer


Prevention advice following cancer treatment

  • People who have had lymph nodes removed as part of their cancer treatment do not need to carry out any self massage or pay for any private manual lymphatic drainage to prevent lymphoedema from occurring. MLD for preventative purposes is not available on the NHS

MLD & SLD for people with lymphoedema

  • MLD is also used where compression can not be easily applied, or as a way to teach the person with lymphoedema how to carry out self drainage. For instance, people with lymphoedema affecting the breast, genital (penis, scrotum or labia) or head & neck areas can have significant improvement with a course of intensive MLD. The person will then need to continue their own self lymphatic drainage on a daily or twice daily basis to achieve long term control of the swelling
  • Self lymphatic drainage (SLD) is a simpler form of MLD which can be taught to the patient. The patient (or carer) then carries this out on a daily basis for between 10-20 minutes. This is best combined with deep abdominal breathing. This should only be taught to the patient by an experienced and qualified lymphoedema practitioner and requires a cautious approach in patients with active cancer or other serious medical conditions

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COMPLETE DECONGESTIVE THERAPY (CDT)

  • Complete Decongestive Therapy (CDT) is the name given to the combination of MLD, MLLB, exercise and skincare as a treatment. The treatment is carried out on a daily basis for periods of between 1 to 4 weeks. Patients keep the bandages on for 24 hours a day; they are then changed by the lymphoedema practitioner and applied again following skincare & MLD. This can be carried out for periods of weeks and, in severe cases, months
  • This treatment, rather than bandaging alone, is particularly effective where there are secondary skin changes or very large misshapen limbs. Often Kinesio taping is applied under the bandaging and over adjoining areas as an additional therapy to encourage the lymphatic flow
  • This therapy will need to be continued with the maintenance element of lymphoedema care – wearing of compression garments, self care in the form of skincare, exercises and SLD if appropriate
  • Some clinics do not have trained MLD therapists and so multi layered lymphoedema bandaging can be applied and the patient taught their own self lymphatic drainage massage to carry out
  • Not all people with lymphoedema require this treatment and all lymphoedema clinics judge patients on their clinical condition as to whether this will improve their swelling.

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KINESIO TAPING

  • Kinesiology is the scientific study of the anatomy, physiology, and mechanics of body movement and originates from Japan. The taping element is an extension of these theories initially discovered many years ago
  • Kinesio taping is the use of a thin type of sticky tape, shown below, which is applied to the skin on and around the affected area in a specific way to follow the lymphatic pathways. It lifts the skin, thereby ‘opening’ the tiny lymphatic capillaries under the skin helping to increase lymph flow. The tape can be applied and left in place for 5-7 days and placed on any area of the body
  • Kinesio tape can be used independently or underneath hosiery or multi layered bandaging. Taping is especially useful for areas of the body where compression can not be easily applied such as on the head & neck, genital and breast regions
  • Patients and relatives can be shown how to apply the tape themselves if appropriate
  • There needs to be further research in the practice of Kinesio taping for lymphoedema but there are some encouraging results and the practice is now widely available at many lymphoedema clinics. One of the benefits of Kinesio taping is that it is appropriate to use on any area of the body and has no contra indications other than in cellulitis (skin infection). This treatment can be used in any form of lymphoedema or chronic oedema and is helpful in oedema as a result of advanced cancer

(picture found on Google image search engine)

LOW LEVEL LASER THERAPY/ULTRA SOUND THERAPY

  • The introduction of a hand held low level laser/ultrasound therapy is a relatively new treatment in the UK. The laser/ultrasound works by breaking down fibrosis (hardening/blockage) in the lymphadematous tissues, thus promoting lymphatic flow.
  • There is further long term research required in the use of low level laser treatment in lymphoedema and this practice is not currently widely available

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COMPRESSION PUMPS

  • Over the years there have been a variety of compression pumps available for people with lymphoedema to use. Some people particularly like these pumps and find them useful
  • The general advice is to check with your lymphoedema specialist prior to using a compression pump. The machines can be expensive to rent or buy and your lymphoedema may not be suitable for its use. There is a risk that the swelling could be pushed into neighbouring body parts such as the genitals or breast/trunk region. Compression pumps can only stimulate a limb (a inflatable cuff can easily be fitted around the arm or leg) and for this reason cannot replace Manual or Self Lymphatic drainage which encourages lymphatic flow in the quadrant of the body where lymphoedema is present rather than in just the limb. Some pumps have caused a ring of fibrosis at the point where the cuff sits and most therapists will recommend that if a pump is to be used it must be used in tandem with lymphatic drainage, compression garments and exercises.

The role of surgery in lymphoedema: ‘debulking’ procedures are not a ‘treatment’ for lymphoedema & chronic oedema

  • For many years there were no solutions for people with lymphoedema and the condition frustrated doctors and patients alike. Historically however, many surgical procedures have resulted in lymphoedema patients being left with greater lymphatic damage, deformity and disability. In the past, debulking procedures were used to remove extensive amounts of the swollen tissues and underlying muscles to improve the condition. These procedures are known as ‘Charles’ or Thompson’ techniques. When large proportions of tissue are removed, the remaining healthy lymphatic vessels are also damaged or removed. The surgery does not alter the cause of the lymphoedema and further lymphatic damage occurs as a direct result of the surgery. Swelling frequently returns soon after the procedure and infection and tissue breakdown (wounds) can be a common and long term problem. These procedures are no longer recommended for the majority of lymphoedema management.
  • There are newer procedures in trial phase which use bypass procedures in an attempt to ‘reconnect’ the lymphatic system. Few patients are eligible for this surgery until further results and long term side effects are known
  • Liposuction – there are some international clinical trials underway investigating the use of liposuction to treat lymphoedema. It should be noted that currently patients who have not responded to traditional therapies (compression, MLD etc) are eligible to be considered for liposuction. A good reduction of the volume of lymph fluid in the affected area appears to be achieved and patients are still required to wear compression garments intensively (24 hours a day for a few months) and continue with these permanently. Generally these trials have explored the procedures in secondary (cancer related) lymphoedema and patient selection for these procedures are strict. Further research is needed to in this area for the long term benefits or complications. The National Institute for Health & Clinical Excellence have issued some guidance regarding liposuction for lymphoedema: www.nice.org.uk/guidance/IPG251

There are three other situations for lymphoedema where surgical intervention is approved and may be required:

  • If lymphangiosarcoma occurs. This is a rare and aggressive cancer which can arise in the lymphadematous limb. When diagnosed the only treatment is that of excision (removal of the cancer/affected area through surgery)
  • In patients who have had a massive limb reduction through intensive treatment (CDT). To ensure the limb does not ‘refill’, the skin may need trimming and tightening. This procedure should be carried out by a surgeon with lymphoedema experience and knowledge and the input from a lymphoedema practitioner essential to follow up care of the patient
  • In male genital lymphoedema, a scrotal reduction may be necessary and in some cases surgical removal of scrotal lymph cysts is appropriate
    If you are considering having surgery it is highly recommended that you seek a lymphoedema therapists opinion prior to any procedure and speak to the Lymphoedema Support Network to discuss your individual circumstances. Some lymphoedema clinics may be able to see you for a one off appointment such as the lymphoedema clinics at St Georges & The Marsden where Professor Peter Mortimer works. There may be a long waiting list for any appointment and funding from your PCT will have to be agreed.

DISLCIAMER: this information has been written for the public and health professionals who have an interest in lymphoedema from a variety of reliable sources which are in the public domain. The author is not responsible for how the information is interpreted or used.