Soft tissue sarcoma resources and support organisations
There are many organisations, support groups, videos and other resources to help you cope with soft tissue sarcoma and its treatment.
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.
Sarcoma organisations
GIST Cancer UK is a network of people with GIST and their relatives. Everyone involved has experience of GIST (gastrointestinal stromal tumours). The website has brief information about GIST and its treatment and a list of links. The organisation runs phone and email support networks and a forum.
Support line: 0300 400 0000
Email: admin@gistcancer.org.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
Support for people who have amputation or disfigurement
This commercial company makes waterproof coverings for dressings or casts on the arms or legs. This means you can go swimming, take a bath or shower without worrying. They can also be used to cover PICC lines. Ask your specialist or nurse about getting one on the NHS or you can buy direct from the company.
Telephone: 0870 041 0150
Email: enquires@autonomed.co.uk
Disability Rights UK provides an information and advice service and campaigns for disabled people's rights.
They also provide a Just Can't Wait card and radar keys that give access to toilets throughout the UK for people who might need to use a toilet in a hurry. They also have several helplines providing information and advice.
General enquires phone: 0330 995 0400
Email: enquiries@disabilityrightsuk.org
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
Living Made Easy is part of the Shaw Trust. It provides information and advice on equipment and aids to help with daily living.
Let's Face It provides support for people with facial disfigurement including those who have, or had, cancer.
The Limbless Association produces a quarterly magazine and publications. It provides information, advice and support for people of all ages who have had amputations, or suffer with congenital limb loss.
Helpline: 0800 644 0185 Monday to Friday 9am to 5pm
Limbless Association
Mayflower Community Hospital
Blunts Wall Road
Billericay
CM12 9SA
General support organisations
Macmillan Cancer Support is a charity that gives practical, medical and financial support to people with cancer in the UK. Its helpline gives guidance on cancer and advice on benefits. It also publishes booklets about cancer and treatments. Information is available in other languages.
Freephone: 0808 808 00 00 (7 days a week, 8am to 8pm)
Contact email form
Macmillan Cancer Support has a separate section on its website for teenagers and young adults with cancer. It offers advice and support on how to cope with cancer, and the chance to share experiences of cancer with other teenagers.
Teenage Cancer Trust is a national charity providing specialist units, expert staff, support events, education and information for 13 to 24 year olds diagnosed with cancer, and their friends and families.
Teenage Cancer Trust also work closely with healthcare professionals and researchers to lead the way on developing cancer care for teenagers and young adults.
Teenage Cancer Trust
The Place
175 High Holborn
London
WC1V 7AA
Phone: 020 7612 0370 Monday to Friday 9am to 5pm
Email: hello@teenagecancertrust.org
The link below takes you to the American National Cancer Institute's patient information about soft tissue sarcoma. It is detailed and comprehensive but there are no images.
Young Lives vs Cancer provides practical, clinical, financial and emotional support for children, young people and their families affected by cancer.
Telephone: 0300 330 0803 Monday to Friday 9am to 5pm
Email: GetSupport@younglivesvscancer.org.uk
Booklets and factsheets
Sarcoma UK has a variety of patient guides to download from their website.
Healthy eating and cancer
Lost for words: how to talk to someone with cancer
Sexuality and cancer
Understanding soft tissue sarcomas
Understanding chemotherapy (also on CD)
Understanding cancer research trials (clinical trials)
Understanding radiotherapy (also on CD)
Talking to children when an adult has cancer
Talking about your cancer
Healthtalk.org
Provides free, reliable information about health issues including mental health, by sharing people's real-life experiences.
Local cancer support and information services
For general health advice and information.
