Organisations, support groups, books, videos and other resources to help you cope with a soft tissue sarcoma and treatment.
Cancer Research UK
Cancer Research UK is the largest cancer research organisation in the world outside the USA. We are the European leader in the development of new anti-cancer drugs. We fund research on all aspects of the disease from its causes, to treatment and prevention, education and psychological support for patients.
We are also committed to producing high quality information for people affected by cancer, health professionals and the general public. We do this through the About Cancer pages on our website, our news and resources, and our range of health awareness leaflets.
Cancer Chat is our free online discussion forum for people affected by cancer. It is a safe space to talk to other people in similar situations, and find information and support.
If you have a question about cancer, you can contact our team of specialist cancer information nurses. Call free on 0808 800 4040, 9am to 5pm, Monday to Friday. To talk in your preferred language, ask for our interpreting service. Or you can send us a question online.
Specific sarcoma organisations and sites
GIST Support UK is a network of people with GIST and their relatives. Everyone involved has experience of GIST (gastro intestinal stromal tumours – a type of sarcoma). The website has brief information about GIST and its treatment and a list of links. The organisation runs phone and email support networks and and forum and it has two meetings a year.
Support for people who have amputation or disfigurement
This UK charity provides support and information for people who have any form of facial disfigurement, including disfigurement caused by cancer.
Tel: 0300 0120 275 (support and advice line)
Skin camouflage service
Changing Faces runs a skin camouflage service, where trained volunteers can teach you how to apply specialist cover creams.
Tel: 0300 0120 276
When Cancer Affects the Way You Look
You can download their booklet When Cancer Affects the Way You Look for free.
The Disabled Living Foundation run a national helpline, an email and letter advisory service. They also have an equipment demonstration centre that can provide solutions for independent living.
Helpline: 0300 999 0004 (Monday to Friday 10am to 4pm)
Telephone: 020 7289 611
Let's Face It provides support for people with facial disfigurement including those who have, or have had, cancer.
Tel: 01843 491291
The Limbless Association produces a quarterly magazine and publications. It provides information and advice for people of all ages who have had amputations or who suffer a congential limb loss.
Telephone: 01245 216 670
Helpline: 0800 644 0185
This national disability organisation has an information and advice service and campaigns for disabled people's rights. It used to be called RADAR.
They also provide a Just Can't Wait card and keys that give access to toilets throughout the UK for people who might need to use a toilet in a hurry.
Tel: 020 7250 8181
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
General support organisations
This charity gives practical, medical and financial support to people with cancer.
Macmillan Cancer Support produce a wide range of booklets, factsheets, leaflets and CDs about cancer and its treatment, in various languages. They also provide information for teenagers and young adults with cancer.
Their helplines give advice on cancer and benefits.They also have an online community group for people aged 16 to 24 who are living with cancer.
Tel: 0808 808 0000
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.
This national charity provides specialist units, support, education and information for teenagers with cancer and their families. They also fund research into young people's cancers.
The Trust holds annual conferences for teenagers with cancer and the health professionals who look after them.
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.
Books about cancer and treatment
N Keene and W Hobbie
O'Reilly, 2012 (3rd revised edition)
This is a US book, so some of the information may not apply (future medical insurance for example). But it is the only book of its kind and has helpful information on coping with emotional and practical aspects of life after cancer.
Booklets and factsheets
Understanding Sarcoma: a new patients guide
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
Videos of people's stories
Find out about the experience of living with and beyond cancer by seeing and hearing people share their personal stories on film. HealthTalk’s researchers created a library of interviews with people who have survived for 5 years or more after a cancer diagnosis.
Find out what people said about issues such as lifestyle choices, physical effects and the impact on work and family.
Find local cancer support and information services
NHS Choices has a service that tells you about local information and support.