Resources and organisations for lymphoedema
There are lots of organisations, support groups and helpful books to help you cope with lymphoedema caused by cancer or its treatment. Lymphoedema means swelling of part of the body caused by a build up of lymph fluid.
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.
Cancer Chat is our online forum where you can share experiences.
Lymphoedema and symptoms organisations
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.
Tel: 01452 790 178
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.
Email: contact@lympho.org
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.
Telephone: 020 7351 4480
Email: admin@lsn.org.uk
LymphVision is a private clinic that provides specialised lymphoedema assessment through fluoroscopy guided mapping of the lymphatics in real-time.
Telephone: 0330 010 1318
Email: clinic@lymphvision.com
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.
Telephone: 0844 800 1988
Email: admin@mlduk.org.uk
Provides support, advice and help in various ways to people affected by chronic pain and those close to them.
Tel: 01362 820750
PainLine 0845 6031593 (Monday to Friday, 10am to 4pm)
Email: aopisat@btinternet.com
A support group for anyone who suffers from chronic pain. They deliver self management training to help people with chronic pain.
Freephone: 0800 783 6059 (Monday to Friday, 8am to 4.30pm)
Email: info@painassociation.com
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
Cancer type organisations
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.
Breast Cancer Now
Ibex House
42 - 47 Minories
London
EC3N 1DY
Tel: 0333 20 70 300
E-mail: hello@breastcancernow.org
Ask a nurse: Contact form
Changing Faces
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.
Phone: 0300 0120 275 (support and advice line)
Head office email: info@changingfaces.org.uk
The contact details for the skin camouflage service are:
Phone: 0300 0120 276
Email: skincam@changingfaces.org.uk
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 it can put you in touch with. It organises support meetings every few months at various places in the UK.
Tel: 0808 171 2455
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
General support and information organisations
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
General Medical Helpline: 020 8994 9874 (Monday to Friday, 6pm to 8pm)
Email: office@medicaladvisoryservice.org.uk
The Medical Advisory Service offers information and advice on medical and health care matters.
For general health advice and information.
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)
NHS 111 gives information if you need fast medical help but its not a 999 emergency.
Phone: 111
Organisations that provide garments and equipment
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.
Email: contact@essentialaids.com
Phone: 01273 719 889
Eto Garments ApS is a company in Denmark that develops and manufactures high quality compression and support bandages.
Telephone: + 45 64 46 13 30
Email: sales@eto-garments.com
Haddenham Healthcare is a company specialising in the treatment of lymphoedema, chronic oedema and wound care.
Telephone: 01844 208842
Email: sales@hadhealth.com
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.
Medi UK Ltd is a manufacturer and supplier of medical compression garments for lymphoedema.
Telephone: 01432 373500
Email: enquiries@mediuk.co.uk
Organisations that can help with issues of sex and sexuality
Provides information about the help and therapy available for sexual difficulties.
Telephone: 020 8543 2707
Email: info@cosrt.org.uk
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)
Offers private and confidential counselling, and psychosexual therapy to help with relationship problems.
Telephone: 0300 100 1234
Information on sexual problems. They provide lists of local specialist practitioners, as well as factsheets on problems such as erectile dysfunction (impotence).
Telephone 020 7486 7262 (Monday, Wednesday and Friday, 9am to 5pm)
Email: info@sexualadviceassociation.co.uk
Books about cancer
A Bloch and others
American Cancer Society, 2010
ISBN 978-0944235782
An American book but most of the information is relevant to the UK. It covers issues such as preventing weight loss and coping with dehydration, fatigue, and infection. It also discusses eating problems and digestion issues, such as swallowing problems, feeling sick and dealing with mouth sores. Focuses on survivorship and how to eat well after treatment.
A Ko, E Rosenbaum and M Dollinger
Andrews McMeel Publishing, 2009
ISBN 9780740786310
The author and contributors of this book are all American cancer specialists. The book covers how cancer is diagnosed, treated and managed day to day.
Jane Freeman
Sheldon Press, 2012
ISBN 978-1847091413
Written by a cancer dietitian, this is a practical handbook for people with cancer. Filled with helpful tips and recipes.
Dr P Mortimer and G Levine
Elliott & Thompson, 2017
ISBN 1783962852
Explains the causes and symptoms of lymphoedema. Describes treatments, including massage, exercise, and compression garments. It also has information about coping day-to-day with lymphoedema.
J F Kelvin and L B Tyson
Jones and Bartlett Publishing, 2010
ISBN 978-0763777609
An American book which gives both doctor’s and patient’s views on coping with the symptoms of cancer and the side effects of treatment. It has information about treatment for pain, nausea, tiredness, and other symptoms.
SL Rose and RT Hara
Jones and Bartlett Publishers, 2009
ISBN 0763762571
An American book which gives information about caring for someone with cancer, including how to support them when they have symptoms or side effects.
Books and booklets about sex and cancer
S Kydd and D Rowett
Big Think Media, 2006
ISBN 0978810805
A responsible guide featuring personal stories and expert voices. Intimacy after Cancer takes an in-depth look at how women respond to, deal with, and overcome barriers to intimacy after a life-changing cancer diagnosis.
Macmillan Cancer Support
This booklet offers information to young people about all aspects of sex and relationships and discusses the effects of cancer treatment on fertility. It also has coping strategies and options for fertility treatment in people whose fertility is affected. Available free to people affected by cancer from Macmillan Cancer Support by calling 0808 500 800.
Ian Banks
J H Haynes & Co Ltd, 2009
ISBN 978-1844258086
A practical guide to sexual health and enjoyment.
Sexual Advice Association
This booklet aims to help cancer patients and their partners understand sexual difficulties that may happen after cancer and ways of overcoming them. Available on the Sexual Advice Association website.
Healthtalk.org
Provides free, reliable information about health issues including mental health, by sharing people's real-life experiences.
Find local cancer information and support near you
There are organisations and support 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.
Scotland
NHS Inform gives information about illness, treatments and NHS services for people in Scotland.
Wales
NHS 111 Wales gives health advice and information for people living in Wales.
Northern Ireland
The Northern Ireland Cancer Network (NICaN) website tells you where to find cancer information and support in Northern Ireland.
