Think you may be at risk?
These questions have been answered using information produced and verified by accepted experts in their field and reflects current practice. The information 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 further information, to ask any questions about this information or to find out what research underpins it, please contact the Lymphoedema Support Network on 020 7351 4480.
"What is lymphoedema?"
Lymphoedema is a chronic swelling which can affect any part of the body, but is most commonly seen in an arm or a leg. It is a condition that develops when the lymphatic drainage system is unable to work effectively; it has either become damaged, overloaded or its function impaired. This results in a build-up of fluid and other substances in the tissues.
"What is the lymphatic system and what does it do?"
The lymphatic system plays a very important part in the way that the body functions. It acts as a waste disposal unit to help drain away fluid, proteins and waste matter from the tissue. It also forms part of the body’s immune system defending the body against infection. The lymphatic system is a one-way drainage system made up of channels or vessels of different sizes. They make a pathway all over the body, starting just underneath the surface of the skin, ending in the neck, where the lymph fluid is emptied into the veins and back into the general circulation. At some point on its journey, the lymph will pass through lymph glands (nodes) such as those found in the neck, armpits or groin. Lymph nodes ‘filter’ the fluid to remove substances that could be harmful to the body or are no longer needed (including cancer cells on occasions).
"Why does cancer treatment mean I am at risk of developing lymphoedema?"
When a diagnosis of cancer is made it is important that those planning your treatment find out as much information as possible about your disease including whether or not it has spread. One way they do this is to take lymph nodes closest to the tumour to see if they have any cancer cells in them. They may only remove one lymph node (known as the sentinel node) – but if cancer cells are found, they may then need to remove more. This surgery, as well as the radiotherapy (that is often needed afterwards), causes damage to the lymphatic system, interrupting its flow and sometimes leads to lymphoedema.
"Which parts of my body are at risk of developing lymphoedema following cancer treatment?"
The way our bodies are designed means that specific parts of our lymphatic system control the lymphatics in specific areas of our body. The easiest way to identify which areas are at risk of developing the condition, following cancer treatment, is to imagine your body divided into 4 quarters (known as quadrants) with an arm or leg in each one as in the diagram below
The areas of your body that are potentially at risk of lymphoedema are the quadrants in which your lymph nodes have been removed or irradiated e.g. if you have had right breast surgery it will be your upper right quadrant that is at risk; if you have had prostate surgery involving lymph node removal from both groins it will be the whole of your lower body that you need to be careful of (both lower quadrants). Please remember that it is the whole of the body area that is at risk, including the back, abdomen, etc.
"What are the chances that I will develop lymphoedema following cancer treatment?"
The reality is that until we have a clearer understanding of why some people develop lymphoedema and others do not, it is impossible for us to predict who will go on to develop it. However, we do know that anyone who has had cancer treatment involving surgery and/or radiotherapy to a major group of lymph nodes may develop the condition. Treatment for some types of cancer put you more at risk than others; these include breast, prostate, vulval, and cervical cancers, cancer of the womb, bladder, penis, and skin, as well as lymphoma and cancers of the head and neck.
Studies have shown that up to 25% of people with breast cancer who have a number of nodes removed will get lymphoedema and up to 7% of those who have sentinel node dissection will develop it, although this statistic rises if you then have to have more nodes removed later. Up to 50% of those who have treatment for vulval cancer develop the condition, 30% of those who have treatment for penile cancer go on to develop lymphoedema and up to 50% of those who have had treatment for melanoma will develop lymphoedema.
It is also known that whilst there is a life-long risk of developing lymphoedema, most patients who have had the cancer treatments listed above, will develop it in the first two years.
One other factor contributing to the risk is weight. Those patients who are overweight are much more likely to develop lymphoedema following cancer treatment.
"How will I know if I am developing lymphoedema following my cancer treatment?"
Some swelling after your surgery is perfectly normal particularly around the site of your scars. This is part of the healing process and usually settles down around six weeks after your operation. However, if your swelling does not go down, or resolves and then comes back, you may have lymphoedema. Other early signs and symptoms that people have experienced include:
• Your clothing, shoes or jewellery may feel tighter than usual.
• You may experience heaviness, stiffness, tightness or a feeling of fullness in your limb.
• Your limb may ache more than normal.
• The normal shape of the limb may not be so noticeable e.g. you may not be able to see the knuckles on your hand, or your ankle bone may look less prominent.
• Swelling may be intermittent – more noticeable at the end of the day, reducing overnight with elevation
"If I develop swelling does it mean that my cancer has come back?"
Developing lymphoedema does not usually mean that your cancer has spread/recurred, but it is always important to report any change in your physical condition to your GP, specialist nurse or oncologist.
"What can I do to reduce the risk of developing lymphoedema?"
As we do not know why some people go on to develop lymphoedema and others do not, please remember that while it is sensible to do all you can to try and reduce the risk, it is equally important to live your life in the fullest way you are able and not to feel guilty that you have caused the swelling if it should develop.
Gaining weight and being overweight is the biggest risk factor in developing lymphoedema. In order to reduce your risk of lymphoedema it is important to maintain a good healthy diet, exercise regularly and do all you can to keep your weight within normal limits. The LSN has a leaflet with further information on healthy eating. The following may also be useful to you.
Movement and exercise
• Gentle movement, exercise and activities will help the muscles pump lymph fluid through your body.
• Movement helps to improve and maintain flexibility and keeps your bones strong.
• Being active helps you achieve and maintain a healthy weight and may improve your emotional wellbeing.
• Some studies suggest that doing exercise may help prevent your cancer returning.
• Any movement that stimulates the muscles is beneficial. Try to do a little every day and build up gradually. Remember to pace yourself and listen to your body.
• Activities such as walking, swimming, cycling, gardening, yoga and Pilates can all be helpful.
• If you notice an activity causes increased aching, swelling or feelings of heaviness in your limb either immediately after or in the days following the activity, reduce the intensity or try some other form of movement.
Preventing infection in the part of your body at risk
One of the roles of your lymphatic system is to help protect the body from some skin infections (cellulitis). As the majority of cancer patients have lymph nodes surgically removed, this puts the limb (and relevant quadrant of the body) at increased risk of developing skin infections. Acquiring an infection in the 'at risk' area could actually ‘trigger’ the onset of swelling so it is therefore extremely important to look after your skin in that particular area. The following advice relates only to the quadrant of your body (including the limb) at risk of lymphoedema:
• Keep the skin in the area clean, dry it carefully, especially between your fingers/toes, and never allow the skin to become dry or flaky. Use a moisturiser daily.
• When cutting your nails take care not to damage the cuticles as this can allow bacteria to enter. Never bite your nails, or ‘pick’ at the skin/cuticles.
• When removing body hair, use an electric shaver to reduce the risk of cutting your skin. Hair removal creams may also be used (do a patch test first to ensure there is no sensitivity), but waxing should be avoided.
• Prevent sunburn by using a high factor sunscreen (at least SPF 30).
• Tattoos and acupuncture in the 'at risk' quarter should be avoided.
• Use common sense/precautions when working in the garden (wear gloves), playing with pets (try and avoid scratches) or performing DIY.
• If you should cut your skin, wash the area carefully and apply antiseptic as soon as possible.
• Do all you can to avoid insect bites, use a repellant when outside.
• If there is an alternative, avoid blood pressure measurements, injections, infusions or blood samples in the 'at risk' quadrant. While robust evidence is lacking that these things cause swelling, they reflect a common sense approach.
"If I am at risk of developing lymphoedema and my ability to fight infection is reduced, should I have a yearly flu vaccine?"
As explained above, while lymphoedema does affect your ability to fight infection it is only in those parts of the body that are at risk. So you are at no more risk of developing other infections, such as flu, than anyone else. If you are invited to have a flu injection by your GP then please do but avoid having the injection in your 'at risk' limb.
However, there is no need to request a flu jab just because you are at risk of developing lymphoedema.
"Why can’t the fluid just be drained off if it does happen?"
When an area of our body becomes swollen it is easy to imagine that it is like a big blister that could be ‘popped’ and the fluid drained off. However, the fluid in lymphoedma is in every cell of the area so it is more like a sponge that is soaked in fluid. This is why, if swelling does occur, compression is used to support the tissues and encourage the fluid out of the swollen area.
"Am I allowed to fly if I am at risk of developing lymphoedema?"
There is no evidence that flying either short haul or long haul will lead to lymphoedema developing. There is also no evidence to suggest that wearing any sort of preventative compression is needed or helps.
When flying, take common sense precautions:
• Do wear regular flight socks to prevent blood clots.
• Keep moving your limbs as much as you are able during the flight – particularly the 'at risk' limb.
• Wear loose fitting clothes, shoes and jewellery to travel in.
• Keep well hydrated during and after the flight (water, not alcohol!).
"What should I do if I think I am developing lymphoedema?"
If you are still in contact with your cancer specialist nurse then contact them for their advice in the first instance. If you are no longer in touch with your cancer specialist nurse then visit your GP for their advice. Do not be afraid to tell them that you think you may have developed lymphoedema and ask for a referral to a lymphoedema clinic.
"Once it has developed can lymphoedema be cured?"
Lymphoedema cannot be cured but the main symptoms including swelling and skin changes can be managed and effectively controlled. Most people who develop lymphoedema continue to lead very full and successful lives and learn how to successfully manage the long-term condition.
"Is there any special diet that I should be following to help me to reduce the risk of developing lymphoedema?"
There is no evidence to suggest that following any specific diet helps to prevent lymphoedema but we do know that keeping your weight within normal limits helps. See the section above – and do read the LSN fact sheet on ‘Healthy Eating’!
These questions have been answered by LSN Nurse Advisor Denise Hardy in November 2016 and will be reviewed in November 2018.