Resources and support

Organisations, support groups, books, videos and other resources to help you cope with a soft tissue sarcoma and 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 supports people with bone or soft tissue sarcomas. They have a website, an email support network and produce a newsletter. 

Support line: 0808 801 0401

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. 

Tel: 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 (formerly The Disabled Living Foundation) gives information and advice on equipment and aids to help with daily living.

Helpline: 0300 999 0004 
Email: info@dlf.org.uk

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 and advice for people of all ages who have had amputations, or suffer with congential limb loss. 

Helpline: 0800 644 0185

The Limbless Association
Unit 10, Waterhouse Business Centre
2 Cromar Way
Chelmsford
Essex
CM1 2QE

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 13-24 year old’s 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
Third floor
93 Newman Street
London
W1T 3EZ

Phone: 020 7612 0370
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.

Books about cancer and treatment

N Keene, W Hobbie and K Ruccione
Childhood cancer guides, 2012
ISBN 978-1-941089-10-1

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

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

NHS Choices has a service that tells you about local information and support.

Last reviewed: 
28 Jul 2021
Next review due: 
29 Jul 2024

Related links