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 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, 2 DVDs about self management techniques for lymphoedema, and a quarterly newsletter.
St. Luke's Crypt
Telephone: 020 7351 4480
The BLS is mainly for health professionals caring for people with lymphoedema. They aim to encourage research and produce guidelines.
Telephone: 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.
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)
Cancer type organisations
Breast Cancer Care provides breast cancer information and support across the UK. All services are free and include a helpline, website, publications and practical and emotional support. It runs sessions about lymphoedema around the country.
Helpline: 0808 800 6000 (Monday to Friday, 9am to 5pm and Saturday, 10am to 2pm)
Telephone: 0345 092 0800 (general enquiries)
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
This organisation provides information about cervical cancer and run a helpline staffed by volunteers who have had experience of cervical cancer or abnormal cervical cells. It also has a confidential medical enquiry service. The website has an online forum where you can exchange experiences and information with others who have cervical cancer.
On the Jo's Trust website you can watch a video about having cervical screening.
- how you receive your invitation for screening
- why it is important to go for your screening appointment
- what happens at the appointment
- what the results mean
Phone: 020 3096 8100
Helpline: 0808 802 8000
General support and information organisations
For general health advice and information.
NHS 111 gives information if you need fast medical help but its not a 999 emergency.
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)
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
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
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.
Organisations that can help with issues of sex and sexuality
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)
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)
Books about cancer
Dr P Mortimer and G Levine
Elliott & Thompson, 2017
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.
A Ko, E Rosenbaum and M Dollinger
Andrews McMeel Publishing, 2009
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.
J F Kelvin and L B Tyson
Jones and Bartlett Publishing, 2010
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
An American book which gives information about caring for someone with cancer, including how to support them when they have symptoms or side effects.
Sheldon Press, 2012
Written by a cancer dietitian, this is a practical handbook for people with cancer. Filled with helpful tips and recipes.
A Bloch and others
American Cancer Society, 2010
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.
Books and booklets about sex and cancer
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.
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.
J H Haynes & Co Ltd, 2009
A practical guide to sexual health and enjoyment.
S Kydd and D Rowett
Big Think Media, 2006
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.
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