• Reference Number: HEY-681/2019
• Departments: Gynaecology, Oncology (Cancer Services)
• Last Updated: 30 September 2019

Introduction

This leaflet has been produced to give you general information about a condition known as lymphoedema. Patients are at risk of developing lymphoedema following gynaecological surgery and its treatment. Most of your questions should be answered by this leaflet.  It is not intended to replace the discussion between you and the healthcare team or nurse specialist but may act as a starting point for discussion.   If after reading it you have any concerns or require further explanation, please discuss this with a member of the healthcare team caring for you.  This leaflet also gives you information about the lymphoedema clinic and their contact details.

What is lymphoedema?

Lymphoedema is a collection of lymphatic fluid (clear fluid that circulates around the body tissues) that builds up in the tissues below the skin and causes swelling to the affected area. It will occur when the drainage routes of lymphatic fluid become blocked or damaged due to cancer or its treatments e.g. surgery, radiotherapy, tumour and trauma. The treatment may include pelvic/ groin lymph node sampling or clearance and radiotherapy.

Can it be treated?

Although lymphoedema is a long term condition, once it develops it can be managed with a programme of skin care, exercise, compression garments and simple lymphatic drainage to control it.

If lymphoedema develops following gynaecological cancer treatment, it most commonly affects the feet, legs, abdomen and pubic region.

What does lymphoedema feel like?

Lymphoedema affects people in different ways but the most commons symptoms are swelling of the lower limbs. You may first notice slight swelling that reduces with overnight elevation. Swelling may also affect the pelvis and pubic region.

You may also experience the following symptoms:

• Feeling of tightness or heaviness.
• Discomfort and fullness in the tissues.
• Pins and needles in the leg.
• Aching in the hip joint, lower back and back of the knee.
• The affected area is warmer than other parts but is not red which may suggest infection.
• Sometimes lymph fluid can leak through the skin, which is then particularly vulnerable to infection. However, this is not a common presenting symptom.

Can I reduce my risk of lymphoedema?

Anyone who has surgery and/or radiotherapy to the pelvis / groin as part of their treatment for a gynaecological cancer could go on to develop lymphoedema. It can occur immediately after your surgery, or months or years later.

It is not yet known why some patients develop lymphoedema following gynaecological cancer treatment and others do not. An infection or injury to the ‘at risk’ area may slightly increase your chance of developing lymphoedema.

The advice below under How to Care For Your Skin may help to protect you, therefore reducing your risk.

How to care for your skin

• Try to avoid products that can dry out your skin when washing.
• Dry well, especially between the toes after a bath / shower to prevent fungal infections e.g. athlete’s foot.
• Moisturise the skin daily with an unperfumed cream.
• Use nail clippers for cutting your toes nails.
• Treat small injuries to your skin by cleaning the area well and applying an antiseptic cream.
• Use a high factor sun cream when exposed to the sun.
• Use an electric razor when shaving your legs.
• Do not allow injections to be given anywhere in your leg or thigh.
• Avoid tight fitting underwear.
• Avoid very hot / cold water; it may be useful to avoid saunas / steam rooms.
• Avoid the lifting / pushing/pulling of heavy weights e.g. shopping bags.

Cellulitis is an infection of the skin, which can present by redness, heat, itching, pain and swelling. It may follow a break to the skin on your legs. You may also develop flu like symptoms (fever / chills). You should contact your doctor immediately for advice on treatment if any of these symptoms occur.

Exercise

• Eat a well balanced diet and try to maintain a healthy body weight.
• Follow the advice you have been given post-surgery / treatment and build up your activities gradually.
• Enjoy regular exercise such as walking and swimming; this will help to keep your joints supple and aid lymphatic drainage.
• Elevate your legs when resting.

Should you require further advice on the issues contained in this leaflet, please do not hesitate to contact the Lymphoedema Team (01482) 461110/461084.

Useful contacts

The Lymphoedema Support Network (LSN) is a patient led website and can be used as an additional source of information: www.lymphoedema.org

General Advice and Consent

Most of your questions should have been answered by this leaflet, but remember that this is only a starting point for discussion with the healthcare team.

Consent to treatment

Before any doctor, nurse or therapist examines or treats you, they must seek your consent or permission. In order to make a decision, you need to have information from health professionals about the treatment or investigation which is being offered to you. You should always ask them more questions if you do not understand or if you want more information.

The information you receive should be about your condition, the alternatives available to you, and whether it carries risks as well as the benefits. What is important is that your consent is genuine or valid. That means:

• you must be able to give your consent
• you must be given enough information to enable you to make a decision
• you must be acting under your own free will and not under the strong influence of another person

Information about you

We collect and use your information to provide you with care and treatment. As part of your care, information about you will be shared between members of a healthcare team, some of whom you may not meet. Your information may also be used to help train staff, to check the quality of our care, to manage and plan the health service, and to help with research. Wherever possible we use anonymous data.

We may pass on relevant information to other health organisations that provide you with care. All information is treated as strictly confidential and is not given to anyone who does not need it. If you have any concerns please ask your doctor, or the person caring for you.

Under the General Data Protection Regulation and the Data Protection Act 2018 we are responsible for maintaining the confidentiality of any information we hold about you. For further information visit the following page: Confidential Information about You.

If you or your carer needs information about your health and wellbeing and about your care and treatment in a different format, such as large print, braille or audio, due to disability, impairment or sensory loss, please advise a member of staff and this can be arranged.