There are lots of organisations and support groups to help you cope with lymphoedema caused by cancer or its treatment.
What is lymphoedema?
Lymphoedema means a build up of lymph fluid that causes swelling in a part of the body. It can develop if there are problems with the . It's pronounced lim-fo-dee-ma.
Cancer Research UK information and support
Cancer Research UK is the largest cancer research organisation in the world outside the USA. We fund research on all aspects of cancer from its causes to prevention and treatment.
We are committed to producing high quality information for people affected by cancer. As well as looking at the information on this website you can call our nurse freephone helpline on 0808 800 4040. They are available from Monday to Friday, 9am to 5pm. Or you can send them a question online.
A charitable membership body of health care professionals with an interest in the care and support of people with lymphoedema. Their resources include a directory of lymphoedema specialist practitioners.
A registered charity that aims to improve understanding, awareness and knowledge of lymphoedema. They actively contribute to the improvement of the management of lymphoedema worldwide, especially in developing countries. They have a number of booklets that you can download free of charge.
LymphConnect provides online support to help you manage your lymphoedema or lipoedema. You can share experiences and get tips and information. They also provide details on events and conferences.
A national charity offering information and support to anyone affected by lymphoedema. It has local support groups, a helpline and a website. It also produces a range of information including factsheets about lymphoedema and its treatment, videos about self management techniques for lymphoedema, and a newsletter.
MLD UK promotes public awareness of Manual Lymphatic Drainage (MLD) from the point of view of both the patient and practitioners for people with lymphoedema. They publish a register of MLD practitioners.
Offers information and support to people with pain and those who care for them. They run a helpline staffed by volunteers, and have an online forum called HealthUnlocked for members to share experiences. You can listen to podcasts which feature interviews with experts and people who are managing their pain. You can also subscribe to their magazine, Pain Matters.
Telephone: 0131 669 5951
Helpline: 0300 123 0789 (Monday to Friday, 10am to 4pm)
Email: help@painconcern.org.uk
Breast Cancer Now is a charity dedicated to funding breast cancer research. They also provide breast cancer information and support across the UK. Services are free and include a helpline, website, publications, and practical and emotional support. It was formed by the merger of The Breast Cancer Campaign and Breakthrough Breast Cancer in 2015.
6th Floor
The White Chapel Building
10 Whitechapel High Street
London
E1 8QS
Changing Faces provide support and information for people who have any form of facial disfigurement including disfigurement caused by cancer. They also provide a skin camouflage service for people in England and Scotland. Trained volunteers teach people how to apply specialist cover creams.
This organisation offers support to people affected by melanoma. It has a free phone line available 24 hours a day that is run by volunteers who have personal experience of melanoma. It also has a network of people affected by melanoma who you can be put in touch with. It organises support meetings every few months at various places in the UK.
Sarcoma UK funds research and supports people with bone or soft tissue sarcomas. They provide information,, support network and a sarcoma clinical trials hub
Support line: Freephone 0808 801 0401 Monday to Friday 10am to 3pm
Text support line: 07860058830
Email: supportline@sarcoma.org.uk
Macmillan Cancer Support improves the lives of people affected by cancer. They provide practical, medical and financial support and push for better cancer care. They provide booklets on cancer and treatments and run a helpline providing cancer information and benefits advice.
Phone: 0808 808 0000 (Monday to Friday, 9am to 8pm – information available in other languages)
Textphone: 0808 808 0121
Confidential telephone health advice and information service for people in Scotland.
NHS Helpline: 0800 22 44 88 (8am to 10pm – for details of pharmacies, GP practices and dentists in Scotland. Can also give information about illnesses, treatments and NHS services)
NHS 24 Helpline: 08454 24 24 24 (for when you are feeling ill and your doctor's surgery is closed)
Offers mobility aids at low cost to help both elderly people and disabled adults and children. Has an extensive range of daily living aids and disability equipment.
Phone: 0845 5194734, Monday to Friday, 9am to 5pm – local rates apply from a landline
Mobile number: 01772 675 040
This is an online shop for daily living equipment for the disabled community, older people, or those who look after people with difficulty getting around.
Kinesio UK provides various training courses in kinesio taping as well as kinesio tape products.
Tel: 0191 2877008
LympheDIVAs is an American company that provides high quality, medical arm sleeves, gauntlets and gloves for lymphoedema. The garments are fashionable with a variety of different patterns.
This organisation provides a telephone helpline staffed by nurses. They can give you information and advice about all aspects of prostate cancer, including erection problems.
Telephone: 0800 074 8383 (Monday to Friday 10am to 4pm and Wednesday 7pm to 9pm)
Find local cancer information and support near you
There are organisations and support services in your local area that you can access. You can ask your specialist nurse or doctor for more information about cancer services near you.
England
The NHS website has a service that tells you about local information and support in England.
