This information leaflet should be read alongside both the information booklet specific to your surgery and the ‘Gynae oncology patient information to prepare you for your surgery and recovery’.
The surgery that has been planned for you will remove lymph nodes at the top of your leg/groin/pelvis. Your surgeon will explain why this is important for you and will explain your individual risks and benefits. One of the risks of this surgery is lymphoedema.
What is lymphoedema?
Lymphoedema is swelling (oedema) in the tissues beneath the skin which occurs when lymph fluid can’t drain away. It develops when the lymphatic system does not work properly. The lymphatic system is a network of channels and glands throughout the body that helps fight infection and remove excess fluid.
Surgery to remove lymph nodes in your leg/groin/pelvis can cause a build- up of lymph fluid, which may occur in the leg, foot, or groin/pubic area. This can happen immediately after surgery or many years later. It’s important that lymphoedema is identified and treated as soon as possible. If it is not treated, it can get worse.
These helpful links give a video guide of the lymphatic drainage system and explain about lymphoedema:
What are the signs of lymphoedema?
Diagnosing lymphoedema early will help to manage symptoms and control swelling more easily. The symptoms of early lymphoedema include:
- swelling of the limb affected
- change in sensation (the limb or area may feel heavy, tight, full, or stiff)
- skin changes
- aching
Symptoms vary depending on whether lymphoedema is mild, moderate, or severe. In early lymphoedema, the swelling may not be very noticeable, but pressure might leave a mark or indentation on the skin. In later stages, the skin often hardens and there may be more complex skin problems. Severe lymphoedema may interfere with your ability to do everyday things. Any new swelling, pain, discomfort or redness in the affected groin or leg may indicate lymphoedema.
People who have had a sentinel lymph node biopsy (SLNB) are still at risk of getting lymphoedema, although the risk is lower. The sentinel node (or nodes, as there may be more than one) is the first lymph node that lymph fluid from a part of the body drains to.
It is not clear why some people develop lymphoedema after certain cancer treatments and others do not. It is thought that some things, such as overuse of a limb (causing inflammation) or a skin infection may trigger swelling in someone who is at risk of developing lymphoedema. The body responds to inflammation and infection by producing extra fluid to help deal with it. If the lymphatic system in that area isn’t working as efficiently as it should be, the extra fluid could overload it and lead to lymphoedema.
There is also a small risk of fluid collection from where the lymph glands were removed; this may form a lymphocyst. Lymphocysts normally resolve on their own; the fluid is either reabsorbed back into the body or can leak out through a weak point in the skin, for example through the groin wound incision. If this does happen, please do not be alarmed. Occasionally these cysts can become infected and require an admission to hospital for intravenous antibiotics.
How can I prevent this from happening?
It is not possible to completely prevent lymphoedema, but the following steps may help reduce your chances of developing the condition. If you already have lymphoedema, this advice may stop it getting worse.
The part of your body affected by lymphoedema is more vulnerable to infection of the build-up of fluid within the tissues. Any cuts in your skin can allow bacteria to enter your body and may quickly develop into an infection. Skin infections can also damage your lymphatic system and cause lymphoedema to develop.
You can reduce your chances of developing skin infections by:
- Not having injections or blood pressure readings in the affected area whenever possible.
- Treating cuts and scratches immediately with an antiseptic cream
- using insect repellents to prevent insect bites
- moisturising the skin daily to keep it supple
- avoiding very hot baths and showers – the heat from saunas, steam rooms and sun beds may also increase the swelling
- using sun cream with a high sun protection factor (30+ SPF) to prevent sunburn
- using anti-fungal powder to prevent fungal infections in your skin or feet
- cutting your nails with nail clippers
- seeing a podiatrist for foot and nail care – but make sure you tell them you have lymphoedema
- If your lower limbs are affected, wearing shoes that fit correctly and provide support on the top of your feet is essential
- using an electric razor if you need to shave to reduce the risk of cutting yourself
- Not wearing tight-fitting clothing or jewellery
What about exercise?
Regular, gentle exercise is very important, especially after surgery, but you should be careful not to do anything too strenuous. Increasing your exercise levels suddenly or lifting heavy weights can put too much demand on your lymphatic system and lead to swelling. If you do overdo things you may notice, your ‘at risk’ limb aches or becomes pink, hot, or swollen. Standing still for long periods or repetitive movements may also cause swelling. Physical activity will help you feel better generally and help to keep your weight down. It also encourages deeper breathing, which stimulates lymph flow. Breathing exercises on their own or as part of yoga or Pilates can also be beneficial.
The link below shows a video of movement/physio after cancer surgery and lymphoedema support -MRI session 4
What about travelling?
When going on holiday you should make sure, you have a supply of insect repellent and antiseptic cream. A two-week supply of antibiotics may be obtained from your GP to take if you notice any signs of infection. These may be red, hot areas on your leg or groin or a ‘flu-like’ feeling.
Here are some tips on what you can do to reduce your risk of developing lymphoedema when travelling:
- avoid sitting in one position throughout the journey
- move around frequently and do gentle stretching exercises when travelling by air or train
- during longer car journeys, make regular stops and get out and walk around
- wear comfortable clothes and shoes, and avoid anything tight-fitting or restricting
- wear flight socks that fit well
- use luggage on wheels that can be pulled instead of picking up or carrying heavy luggage
Who can I contact for advice if I think I may have lymphoedema?
Your clinical nurse specialist will be able to give you basic advice and can refer you to a physiotherapist who specialises in lymphoedema. Quite often, a referral will be made to a local hospice as they offer specialised lymphoedema assessment and support. If you do have any queries or think you are developing lymphoedema then please contact the department sooner, do not wait for your next hospital appointment as lymphoedema can be treated much more successfully if caught early.
Coping with your emotions if you have lymphoedema
Coping with lymphoedema can be difficult because it changes the way your body looks and can have an impact on your lifestyle. You may find it emotionally challenging to accept these changes. Many people experience different feelings such as:
- self-consciousness
- guilt
- anger
- low mood
It is natural to have these emotions. Talking to your nurse specialist, your friends and family or a counsellor can help. It is important to explain how you feel to those around you. They will be able to provide you with the support you need. Talking to others who have lymphoedema can also be a great source of help. You can do this through support groups or online forums.
Additional Support and information:
- The Lymphoedema Support Network (LSN)- Telephone: 02073514480 www.lymphoedema.org
- Lymphoedema treatment – lymphatic drainage massage, exercise | Macmillan Cancer Support
- https://www.nhs.uk/conditions/lymphoedema
- https://www.cancerresearchuk.org/about-cancer/coping/physically/lymphoedemaand-cancer/symptoms
- https://www.royalmarsden.nhs.uk/your-care/living-and-beyondcancer/lymphoedema
Prescription exemption
If you are diagnosed with cancer, you are exempt from prescription charges for five years. If you contact your GP, they will issue a certificate for this.
Research Projects
The NGOC department is actively involved in several research projects with the aim of increasing understanding of cancer and improving care of all patients. You may be approached by a member of the research team during your investigation, treatment or during follow-up to be part of a research project that you may be eligible to participate in. Whilst we encourage all patients to consider getting involved, this is not essential, and your care will not be affected if you choose not to participate.