There are organisations, support groups, books, videos and other resources to help you cope with bone cancer 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 us a question online.
Cancer Chat is our online forum where you can share experiences.
Bone cancer support organisations
The North of England Bone and Soft Tissue Tumour Service cares for adults and children with bone and soft tissue tumours, including sarcoma.
Services are delivered at the Freeman Hospital and the Great North Children’s Hospital at the Royal Victoria Infirmary in Newcastle.
Switchboard: 0191 2336161
This organisation provides information, support and counselling for people with primary bone cancer and their families. They promote research into the causes and treatment of primary bone cancer, in particular osteosarcoma and Ewing sarcoma.
Telephone: 0113 258 5934
The Oxford Sarcoma Service is a large team of surgeons, oncologists, nurses, physiotherapists, researchers and co-ordinators who diagnose and treat sarcoma tumours.
Nuffield Orthopaedic Centre
Phone: 0300 304 7777
The Royal Orthopaedic Hospital is a leading centre for orthopaedic oncology. The team specialises in the diagnosis and treatment of benign and malignant tumours of bone and soft tissues.
Royal Orthopaedic Hospital
Bristol Road South
Phone: 0121 685 4000
The Scottish Sarcoma Network (SSN) aims to ensure equity of care for all patients in Scotland with sarcoma. The website lists treatment centres for bone cancer and soft tissue sarcoma in Scotland.
Treatment centres are in:
- Aberdeen (split between Aberdeen Royal Infirmary and Woodend Hospital)
- Dundee (Ninewells Hospital)
- Edinburgh (split between Royal Infirmary and Western General Hospital)
- Glasgow (split between Royal Infirmary, Gartnavel General Hospital, Queen Elizabeth University Hospital Campus and Beatson West of Scotland Cancer Centre)
- Inverness (Raigmore Hospital)
The Robert Jones and Agnes Hunt Orthopaedic Hospital NHS Foundation Trust (RJAH) is a leading orthopaedic centre of excellence.
The Robert Jones and Agnes Hunt Orthopaedic Hospital NHS Foundation Trust (RJAH)
Phone: 01691 404000
The RNOH is a designated centre for the care and treatment of people with bone and soft tissue cancers.
The Royal National Orthopaedic Hospital
Phone: 020 3947 0100
The Skeletal Cancer Trust is committed to improving bone cancer research, providing the best possible care and support at each stage of treatment and to bettering the quality of life for all patients. They are based at the Royal National Orthopaedic Hospital (RNOH), Stanmore.
Skeletal Cancer Trust
Royal National Orthopaedic Hospital Trust
General support organisations
REACH offers support for families of children with deformities of, or diffuculty using, their hands or arms. They support research into the causes and treatment of upper limb deficiency.
Telephone: 0845 130 6225 or 020 3478 0100
ASTRiiD stands for ‘Available Skills for Training, Refreshing, Improvement, Innovation and Development’.
ASTRiiD is a not for profit organisation connecting businesses with people who have long term health problems, including cancer, but who still have skills to offer employers. A person can register their skills and experiences along with how much time they might be able to give to a potential employer. This might be a number of days a week or even just a few hours a month.
A company registers and highlights the skills and experiences that they are looking for in order to complete some work. ASTRiiD then compares these two registrations to see if there is match. If there is a good match then ASTRiiD will introduce one side to the other.
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
Along with a comic book line, Jumo Health produces other products such as podcasts, videos, and games. They are all designed to help children, their parents and carers learn more about their health condition.
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
Macmillan Cancer Support
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
Shine Cancer Support
Shine is a charity working to create a community of young adults in their 20s, 30s and 40s who have experienced a cancer diagnosis.
Shine has local peer support networks across the UK and runs a number of annual events including Shine Camp (a summer camping trip) and Shine Connect, a conference for young adults with cancer, their friends and family, and healthcare professionals.
Shine also runs workshops on topics such as working after cancer and managing anxiety and depression.
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
93 Newman Street
Phone: 020 7612 0370
Young Lives vs Cancer (previously called CLIC Sargent) provides practical, clinical, financial and emotional support for children, young people and their families affected by cancer.
Telephone: 0300 330 0803
Books about bone cancer
Medikidz Publishing, 2009
This is a comic book for 8 to 15 year olds produced by JumoHealth. It explains a type of bone cancer called osteosarcoma.
M Self and R Chaytor
Harper Collins, 2002
This is a story of one woman's fight with bone cancer. Mary Self was diagnosed with bone cancer in 1983. After an above the knee amputation and chemotherapy her cancer seemed cured. In 1999 her cancer came back. She had more treatment. But her doctors weren't hopeful the cancer would respond. She went on to beat the cancer. She is convinced that her faith helped her.
Books about cancer and treatment
J Mackay and N Hirano
New Harbinger Press, 2002
Written by American oncology nurses, this book has practical tips for coping with treatment side effects.
Videos of people's stories
Learn 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.
People discuss issues such as lifestyle choices, physical effects and the impact on work and family.
Local cancer support and information services
NHS Choices has a service that tells you about local information and support.