COPING WITH LYMPHOEDEMA FOLLOWING A MASTECTOMY OR LUMPECTOMY
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COPING WITH LYMPHOEDEMA
FOLLOWING A MASTECTOMY
OR LUMPECTOMY
This information has been produced and verified by accepted experts in
their field. It reflects current best practice and evidence based research
where appropriate. It has been designed to assist you in managing your
condition and is not intended to replace advice you may receive from
your healthcare practitioner. If you or your healthcare practitioner
would like to ask any questions or require details of the research used
to develop this information, please contact the Lymphoedema Support
Network on 020 7351 4480.
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 following treatment for cancer.
Lymphoedema can develop when the lymphatic drainage system is unable to work
effectively because it has become damaged, overloaded or its function has been
impaired. Lymphoedema is different to the swelling which develops immediately
after surgery and then settles within a few weeks due to the normal healing
process.
The lymphatic system plays a very important part in the way that the body
functions, for two reasons:
n It helps to drain away fluid, proteins and waste from the tissues.
n It is part of the body’s immune defence system against infection.
THE LYMPHOEDEMA SUPPORT NETWORK Page 1Coping with lymphoedema following a mastectomy or lumpectomy fact sheet
Why have I developed lymphoedema?
Surgery and/or radiotherapy (as used for successful treatment of breast cancer)
are the commonest reason for the onset of lymphoedema. However, infection
(cellulitis), inflammation (eczema/psoriasis in the arm/hand), deep vein thrombosis
and immobility can also be causative factors.
Damage to the lymphatic drainage system from any of the above can result in
an increase of fluid accumulating in the tissues. Swelling will develop when the
lymph vessels cannot keep up with the extra demands on their drainage capacity.
Following a mastectomy or lumpectomy, swelling most frequently develops in
the arm and/or hand but can also develop in the remaining breast tissue or on the
chest wall. Your doctor will be able to confirm if any swelling that develops after
treatment for breast cancer is lymphoedema.
In the early stages, the swelling can be soft to the touch and may come and go –
especially overnight when the arm is not hanging down. Over time, the swelling
can become a constant feature and the tissues under the skin may start to feel firm
and thickened. The arm or breast can also feel heavy and uncomfortable and the
skin can become dry. Function and movement of the arm may be affected as the
arm gets heavier – and posture/balance may be affected.
What treatment is available?
Although the damage to the lymphatic drainage system cannot be reversed, the
swelling can be reduced and controlled effectively, especially if treatment is 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
Keeping the skin well moisturised and in good condition is an important part
of managing lymphoedema and can help prevent infection (cellulitis) from
developing. It is important, therefore, that you:
n Wash the skin with a mild, non-perfumed soap then gently and carefully pat the
skin dry without rubbing. The daily application of a perfume free moisturiser,
such as E45 cream (n.b. contains lanolin) to the area of swelling will keep the
skin in good condition and prevent dry, flaky areas of skin developing which can
provide an entry site for infection.
n Avoid scratches, abrasions or cuts to the skin and if these do occur, treat them
promptly by applying an antiseptic such as Savlon/TCP/tea tree oil. If you
suspect that a cut or scratch has become infected, contact your GP as soon as
possible, as you may need antibiotics (see section on Cellulitis).
n Take extra care when cutting nails and do not cut/push the cuticles.
n When removing body hair, use an electric shaver, rather than a wet shaver (razor
blade), to reduce the risk of cutting your skin. Depilatory (hair-removing) creams
may also be used, but check that you are not sensitive or allergic to the cream
first. Waxing should be avoided.
THE LYMPHOEDEMA SUPPORT NETWORK Page 2Coping with lymphoedema following a mastectomy or lumpectomy fact sheet
n Try to avoid any trauma or injury to your arm or hand, by being particularly
careful in the garden and kitchen. A good pair of gardening gloves will protect
your skin and remember to use oven gloves when required.
For more information, see the LSN fact sheet ‘Skin Care for people with
Lymphoedema’.
What is cellulitis?
Cellulitis is an infection usually caused by bacteria entering the skin through a cut or
break in the skin. It is characterised by general ’flu’-like symptoms (with or without
nausea and vomiting), inflammation of the skin (redness), swelling and heat in the
area of lymphoedema which then becomes painful and tender.
People who develop lymphoedema following a mastectomy/lumpectomy are
particularly susceptible to cellulitis because the lymphatic system is damaged (due
to surgery and/or radiotherapy). If lymph glands/nodes are removed, then the
ability to fight local infection is reduced. This reduced immunity is confined to the
region affected by the lymphoedema and does not apply to the body generally.
Swelling may dramatically increase and pain may occur in the swollen area or the
armpit. Cellulitis may be a result of an accidental scratch or cut to the skin or an
insect bite. However, in some cases, the cause is not obvious at all.
If cellulitis does occur, it is vital that you contact your GP immediately. Prompt
intervention with appropriate antibiotics (for 2 weeks) is required
(alongside rest, elevation of the limb, analgesia, fluids). Your usual compression
therapy should be suspended until the limb feels better.
For more information see the LSN fact sheets ‘What is Cellulitis?’ and
‘Management of Cellulitis in Lymphoedema’.
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. You may 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 encourage lymph drainage from the affected area if these are
required. Swimming, Yoga and T’ai 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 fact sheet ‘Recreational Exercise With
Lymphoedema’.
Manual Lymphatic Drainage (MLD)
MLD is a gentle and specialised form of massage, carried out by fully trained
practitioners. It consists of very light, rhythmical pumping hand movements to
stretch the skin and to encourage lymphatic drainage. The aim of MLD is to help
stimulate and improve normal drainage in healthy areas of the body so that fluid
can drain away from swollen/congested areas much more easily. MLD can also help
to reduce pain/discomfort as well as improve the hard, firm tissues that can be so
problematic.
THE LYMPHOEDEMA SUPPORT NETWORK Page 3Coping with lymphoedema following a mastectomy or lumpectomy fact sheet Following a mastectomy or lumpectomy, MLD can be 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. It can also help to improve the condition of scars. MLD works best when used as part of a treatment programme and is not a ‘cure’ in itself. Although some NHS clinics are able to offer MLD as part of treatment, many have strict guidelines as to who they are able to treat, so some people have, or choose, to pay for this element of their treatment themselves. If you would like to know where you can find a qualified MLD therapist, then contact the LSN office. Your lymphoedema practitioner may show you a simplified version of this technique called Simple Lymphatic Drainage (SLD). This will enable you, your partner or carer to perform this technique at home and enable you to continue the treatment more often. The LSN also has a self-management DVD which clearly demonstrates the SLD technique. For more information about MLD see the LSN fact sheet ‘Manual Lymphatic Drainage for people with lymphoedema’. Compression Therapy This part of the treatment depends on the severity, extent 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 bandages and padding material may be recommended by your lymphoedema 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, pressures and sizes and the choice of garment depends upon your swelling. Your lymphoedema practitioner will be able to select the most appropriate garment to help further reduce and/or maintain your swelling. Many of these garments are now available on prescription making it easier for additional garments to be obtained. Sometimes, compression is required on the remaining breast tissue or chest wall over the mastectomy scar. A specialist bra may be recommended or it may be possible to use padding/foams to wear inside your normal bra to offer more pressure to certain areas. Sometimes, bandaging and Kinesio Taping is used on troublesome areas, if appropriate. Don’t be afraid to mention troublesome or painful areas of concern. Your practitioner will try to find a solution to the problem and improve the situation for you. Compression garments are the mainstay of lymphoedema management and should be worn during the day, particularly during exercise, and removed at night. At least two garments will be required to ensure that you have enough for one to wear whilst the second is being washed. For more information see the LSN fact sheets ‘The Use of Compression Garments in Lymphoedema Management’ and ‘Multi-Layer Lymphoedema Bandaging (MLLB)’. THE LYMPHOEDEMA SUPPORT NETWORK Page 4
Coping with lymphoedema following a mastectomy or lumpectomy fact sheet
Kinesio Taping
Kinesio Tape is a specialised form of adhesive tape made up of 100% cotton that
has elastic properties. Although originally designed in Japan to treat soft tissue
and sporting injuries, it was introduced into the UK to assist in the management of
many conditions including lymphoedema. It can help to:
n relieve congestion in a swollen breast, chest and neck areas
n reduce swelling in the hand and fingers by taping under compression hosiery or
bandages. Sometimes it may be used instead of garments/bandages when it is
not advisable to use them
n tape the arm underneath bandages as part of an intensive treatment programme
n soften scars and improve their appearance and drainage capacity in and around
them
Excellent results have been obtained using this technique, but unfortunately it is
not, as yet, available in all areas. Practitioners require additional training and the
tape has yet to be made available on prescription. As a result, many patients have to
purchase their own supplies if they wish to continue with the treatment at home.
For more information see the LSN fact sheet ’The Use of Kinesio Tape in
Lymphoedema Management’.
How else can I help myself?
Heat increases the likelihood of swelling in the arm.
n 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.
n 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 (as high as possible e.g. SPF 50 – 60) and lightweight clothing at all times.
For further information see the LSN fact sheet ‘Holidays and Travel for
people with Lymphoedema’.
In everyday activities try to:
n 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.
n Take care when ironing, to avoid burns to your affected hand or arm.
n Use a thimble when sewing to avoid trauma through needle pricks.
n Avoid scratches. Remember that these can occur quite unexpectedly – from pets,
rough surfaces, brambles or even the car door.
THE LYMPHOEDEMA SUPPORT NETWORK Page 5Coping with lymphoedema following a mastectomy or lumpectomy fact sheet
n Use an insect repellent to avoid insect bites on the affected hand or arm as these
can lead to inflammation and infection.
n Carry shoulder bags on the unaffected side.
n Avoid lifting heavy objects, including small children, and avoid sudden and
repetitive activities particularly if you are not used to doing them regularly. Exercise
is vital, but it has to be introduced gradually. By steadily improving/increasing
your resistance, strength and repetitions, you will soon be able to do more.
n When possible, keep your arm moving when walking or sitting. Use your
exercises to keep the lymph moving, and prevent the limb hanging down –
support it on a pillow when at rest, or in a pocket when walking.
Excessive pressure to the tissues of the affected area can exacerbate or trigger
lymphoedema, so it is advisable to avoid situations where this may occur, whenever
possible. For example, avoid blood pressure readings in the affected arm.
n Whenever possible, injections or blood samples should be taken from your
unaffected arm. This may be difficult during a course of chemotherapy but the
legs can be used as an alternative. The abdomen and buttocks may also be used
for injections if you are suffering from lymphoedema in both arms. Similarly, it is
best to avoid having acupuncture on the affected side.
n Classical or Swedish massage can be very firm and cause excessive pressure on
the affected arm, so although massage of this type can 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.
n Watches, bracelets, rings and other jewellery can be worn on the affected arm
and hand but should not be tight. Try to make sure that jewellery has adjustable
fastenings so that it can be loosened if necessary.
n Tight clothing can be uncomfortable in an area where there is swelling. Broad
straps on bras are less likely to cut in and you may want to consider purchasing
broad attachments or use old shoulder pads. 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 your hospital.
The LSN has produced a useful plastic lymphoedema alert bracelet which may be
worn during a stay in hospital to alert medical practitioners to the condition and
ensure that attempts to take blood pressure readings, give injections or withdraw
blood from the affected area are avoided.
Pain and Lymphoedema
Lymphoedema is not usually painful but the arm may ache, feel heavy or
uncomfortable at times and the skin may feel taut, or tight.
Pain in the arm/shoulder/hand or breast/chest area may occasionally be triggered
by a variety of things such as muscle strain from over exertion, or nerve pain as a
result of scarring from radiotherapy/surgery.
THE LYMPHOEDEMA SUPPORT NETWORK Page 6Coping with lymphoedema following a mastectomy or lumpectomy fact sheet Intense feelings of pain are unusual (except during an attack of infection), but if you develop pain or are worried about any new or persistent pain in your arm it should always be reported to your doctor so that the cause can be investigated. Lymphoedema after mastectomy/lumpectomy can be very distressing. Many find the condition harder to accept than the cancer itself. However, it is important to remember that lots can be done to improve the condition – especially if caught in the early stages. Self-management techniques are extremely beneficial at controlling the situation, and if carried out on a daily basis, will help keep your lymphoedema to a minimum. Contributors Mary Woods, Clinical Nurse Specialist/Head of Lymphoedema Services, The Royal Marsden Hospital NHS Foundation Trust, Sutton, Surrey. 1, 2 Denise Hardy, Clinical Nurse Specialist – Lymphoedema, Kendal Lymphology Centre, Cumbria LSN Nurse Advisor. 1, 2 Professor Peter S. Mortimer, Consultant Dermatologist at the Royal Marsden and St. George’s Hospitals, London. 1, 2 LSN Trustees. 1, 2 1. Member of original contributors’ panel 2. Member of 05/2012 contributors’ review panel This information was revised in 05/2012. It will next be reviewed in 05/2014 or before, should the LSN become aware of significant changes in practice. THE LYMPHOEDEMA SUPPORT NETWORK Page 7
Coping with lymphoedema following a mastectomy or lumpectomy fact sheet LYMPHOEDEMA IS THE SWELLING OF THE LIMBS AND BODY DUE TO THE ACCUMULATION OF LYMPH. Lymphoedema affects at least 100,000 men, women and children in the UK causing swelling of the limbs or body and an increased risk of infection (cellulitis). However, it remains an underestimated health problem and is little known or understood by many medical practitioners. 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 and they play an important part in the body’s defence against infection, by removing excess protein, cells (which may include cancer cells) and micro- organisms. 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 leads to changes in the tissues such as fibrosis (hardness) and an increased risk of infection. The swelling can then become even more difficult to control. Primary and Secondary Lymphoedema Primary Lymphoedema develops as a result of a fault within the lymphatic system itself - usually as a result of genetic underdevelopment or weakness of the lymph conducting pathways. It can affect children and men or women at any age. Secondary Lymphoedema is the result of damage to lymphatic pathways. This maybe the result of treatment for cancer following surgery or radiotherapy. It can also occur as a result of infection, severe injury, burns, or any other trauma that can damage the lymphatic nodes/vessels. It can also arise as a result of the venous system not working efficiently (i.e. those who have had a deep vein thrombosis (DVT), varicose veins or varicose ulcers). Those patients suffering from lack of muscle movement (i.e. those suffering from a stroke or Multiple Sclerosis) may also be at risk. EARLY DIAGNOSIS AND EARLY TREATMENT ARE VITAL TO CONTROL LYMPHOEDEMA. Become a member of the LSN – see next page. THE LYMPHOEDEMA SUPPORT NETWORK Page 8
Coping with lymphoedema following a mastectomy or lumpectomy fact sheet
The LSN is a registered charity founded in 1991. It provides vital information and
support for people with lymphoedema, while working towards the availability of
better national resources for lymphoedema treatment.
What the LSN offers to members:
n Telephone information and support line
n Quarterly newsletters containing current information on lymphoedema, research
and treatment
n A wide range of ‘gold standard’ fact sheets
n A frequently updated website
n Self-help DVDs
n School packs
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 £15.00
Annual overseas subscription £30.00
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 9Coping with lymphoedema following a mastectomy or lumpectomy fact sheet
Fact sheets available:
Breast and truncal oedema
Management of cellulitis in lymphoedema
Recreational exercise with lymphoedema
Manual Lymphatic Drainage for people with lymphoedema
Skin care for people with lymphoedema
Holidays and travel for people with lymphoedema
The use of compression garments in lymphoedema management
Reducing the risk of developing lower limb lymphoedema
Reducing the risk of upper limb lymphoedema
For information and help, please contact
The Lymphoedema Support Network
St Luke’s Crypt, Sydney Street, London SW3 6NH
Telephone: 020 7351 4480 (Information and Support)
020 7351 0990 (Administration)
Facsimile: 020 7349 9809
e-mail: adminlsn@lymphoedema.freeserve.co.uk
Website: www.lymphoedema.org
Registered Charity No. 1018749
Patron Zoë Wanamaker CBE
THE LYMPHOEDEMA
SUPPORT NETWORK
LSN 05/2012
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