INFORMATION FOR PATIENTS
Lymphoedema services
Introduction
The aim of this leaflet is to help you
understand what lymphoedema is, its
causes, available treatments and what
you can do to help yourself.
What is lymphoedema?
Lymphoedema is swelling in the
tissues under the skin, it occurs when
the lymph cannot drain away properly
Why does lymphoedema appear?
Lymphoedema appears when the
lymph vessels or nodes are blocked,
reduced or scarred. There are two
main types:
Primary lymphoedema
Some people may be born with an
underdeveloped lymphatic system and
can be affected at any age.
Secondary lymphoedema
This can occur in the treatment for
cancer. For example scar tissue
formed after an operation,
radiotherapy or removal of lymph
nodes.
It can also occur as a result of
overloading of the venous system,
infection, burns or any other trauma.
Lymph: Is a colourless fluid that forms in
the body’s tissues. It normally drains back
into the blood circulation through a
network of lymph vessels and lymph
nodes. This is called the lymphatic
system.
Oedema: Means swelling.
What happens?
If the drainage route through the
lymphatic system is blocked,
overloaded or scarred, it can prevent
the lymph draining properly from the
affected part of the body
The fluid then builds up in the tissue of
the affected body part, causing
swelling.
Can lymphoedema be prevented?
Often it isn’t possible to prevent disruption
to the lymphatic system because surgery
or radiotherapy may be the best way of
treating your condition. However, it is
usually possible to treat any swelling and
prevent it from becoming a significant
problem.
Help to prevent damage to the skin
and wear clothing when working. For
example, if your arm is at risk wear
gloves when washing up or taking hot
food out of the oven. If your leg is at
risk make sure your legs and feet are
covered when gardening
Use an electric razor or a depilatory
cream, not razor blades, to remove
unwanted body hair
Take care when cutting the nails on
your affected limb. Don’t cut your
cuticles
Use an insect-repellent to prevent
bites. If a bite becomes infected
contact your GP as soon as possible
If you’re sunbathing, use a high factor
sun tan lotion. Take care not to burn.
How do I know if I’m at risk of
developing lymphoedema?
Your hospital consultant will be able to tell
you if your condition or treatment could
have affected the lymph drainage in any
part of your body.
How can I reduce the risk of
developing lymphoedema?
If there is a chance that you may develop
swelling, the following advice may help
you reduce your risk:
- Take care of your skin
If your treatment may have affected the
lymph drainage in a particular arm/leg
then you’re more likely to develop an
infection in this limb, so:
Try to avoid cuts and scratches. If
they do occur, wash them thoroughly
and apply a simple antiseptic cream
If you notice any signs of infection, for
example the skin becomes hot or red,
contact your GP as soon as possible.
You may require antibiotics
To prevent your skin becoming dry or
cracked, moisturise it daily with E45
Cream (available from chemists or on
prescription)
Try to avoid having injections into, and
blood samples taken from, the
affected limb
-
Help your lymph system to drain
Try to avoid having your blood
pressure taken on the affected limb
Wear loose clothing that doesn’t
pinch or constrict your limb or body
Try to use your limb normally, as
muscle activity helps lymph drainage
Try to avoid extremes of heat or cold,
such as saunas or ice packs
Try to keep your weight within the
normal range for your height as this is
thought to help lymph drainage.
-
Exercise
Start gently and slowly increase the
amount you do
If you have concerns about resuming
a particular activity, or taking up a new
sport, you can discuss it with your
hospital consultant or physiotherapist
Try to avoid making any sudden
strenuous movements with your
Page 2 of 4
affected arm, such as pushing or
lifting heavy bags
If your leg is affected, try to avoid
standing still for long periods.
What should I do if I notice any
swelling?
Always tell your hospital consultant if
you notice signs of swelling. There
are many types of swelling besides
lymphoedema and your hospital
consultant is the best person to find
out the reason for it
If you are not under a consultant,
speak to your GP. If he thinks the
swelling is due to lymphoedema, he
can refer you to an appropriate
consultant or clinic
You should report any swelling,
however mild, as lymphoedema is
easier to treat in the early stages.
What is the treatment for
lymphoedema?
Although lymphoedema cannot be
cured, the swelling can be improved
with the correct management
Treatment helps move fluid from a
swollen body part to an area where
the lymphatics are working normally
This can be achieved in various ways,
depending on the severity of the
swelling
Treatment can consist of a specially
designed elastic sleeve/stocking,
specific exercises, advice on skincare
and a type of gentle massage
Everyone responds differently to
treatment, but as general rule it may
be several months before you notice
results.
Why can’t the fluid be drained off?
This sort of swelling does not collect
as a single pool of fluid. Instead it is
spread throughout the tissues, making
drainage difficult
Also, lymph is formed in the tissues all
the time, so would be replaced as
quickly as it was drained
Treatments that move fluid and
support and protect the skin are more
likely to reduce and control the
swelling in the long term.
Will the amount of fluid I drink have an
effect on lymphoedema?
No, you will not reduce or increase the
swelling by changing the amount that you
drink.
Would taking a diuretic help to get rid
of the fluid?
As a rule diuretics (water tablets) have
little effect on this type of swelling.
What effect will lymphoedema have on
my life?
If lymphoedema is recognised and advice
sought early, it is likely you will be able to
continue your everyday activities as
normal.
Page 3 of 4
Your questions
You may find it useful to write down any
questions when you think of them in the
space below:
………………………………………………
………………………………………………
………………………………………………
………………………………………………
………………………………………………
………………………………………………
………………………………………………
………………………………………………
………………………………………………
………………………………………………
………………………………………………
………………………………………………
………………………………………………
………………………………………………
………………………………………………
………………………………………………
………………………………………………
………………………………………………
………………………………………………
………………………………………………
………………………………………………
Contact details
Lymphoedema Service
Clinic 10
King’s Mill Hospital
Telephone 01623 672384
Further sources of information
Our website: www.sfh-tr.nhs.uk
External websites may be referred to in specific cases. Any
external websites are provided for your information and
convenience. We cannot accept responsibility for the
information found on them. Stating a web address does not
imply we endorse a particular site. Neither does not stating a
web address imply lack of endorsement.
Patient Advice and Liaison Service
(PALS)
The PALS team is available to help with
any of your comments, compliments or
concerns and will ensure a prompt and
efficient service. Contact details:
King’s Mill Hospital 01623 672222
(out of hours answer phone)
Email: [email protected]
Newark Hospital
01636 685692
(out of hours answer phone)
Email: [email protected]
If you need this information in a different
language or format, please contact PALS,
as above.
Whilst every effort has been made to ensure the accuracy of
the information contained in this publication, Sherwood Forest
Hospitals NHS Foundation Trust cannot accept liability for
errors and omissions. The information should not replace
advice that your relevant health professional would give you.
Leaflet code: PIL3051
Created: April 2012 / Review Date: April 2014
The Lymphoedema Support Network
St Luke’s Crypt
Sydney Street
London SW3 6NH
Helpline: 020 7351 4480
Website: www.lymphoedema.org/lsn
Page 4 of 4