Salivary gland cancer resources and support organisations

There are many organisations, support groups, books, videos and other resources available to help you cope with salivary gland cancer 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.

Head and neck cancer organisations and websites

Salivary Gland Cancer UK is a charity for those with rare salivary gland cancers such as adenoid cystic carcinoma. The charity organise regular networking meetings for those affected (in person or via zoom). The website includes information about treatment, how to cope and patient stories.

This UK based charity works to improve standards of mouth care. Their website has good information on cancer and caring for your mouth.

The Oral Health Foundation was called the British Dental Health Foundation until 2016.

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

This UK organisation for people with facial disfigurement offers: 

  • telephone support
  • a service to link up people in similar situations
  • dietary and medical advice
  • social activities
  • resources and a newsletter

Email: sandra.smith@lets-face-it.org.uk

Mouth Cancer Foundation is a charity that supports people affected by head and neck cancer. Its website has information about mouth, throat and other head and neck cancers. The website also has a forum and information on local support groups.

Tel: 01924 950 950 (Monday to Friday 9am - 5pm)

Email: info@mouthcancerfoundation.org

Saving Faces is funding education and research to improve medical treatment and support for people after facial surgery.

Sometimes it can be helpful to talk to someone who has been in a similar situation. Saving Faces can put you in touch with other people who have had facial surgery.

Phone: 020 3417 7757

Email: info@savingfaces.co.uk

This UK charity has been set up by cancer specialists and people affected by head and neck cancer. They aim to raise awareness about head and neck cancer, provide information and advice, and act as a voice for people with head and neck cancer and their families. Their website also has stories from people with head and neck cancer. 

Support organisations

The Rare Cancer Support Forum has several message boards so people with less common or rarer cancers can get in touch with each other. Friends and families of people with rarer cancers can also use the message boards to share their experiences, give support or get advice from people in similar situations.

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

Maggie’s is a national charity with centres across the UK. They offer care and support to people affected by cancer. Each centre is beside an NHS cancer hospital and is run by specialist staff.

You can join a support group, take part in weekly sessions like relaxation and stress management, or learn about nutrition and health. You can also visit just to have a cup of tea and a friendly chat.

Phone: 0300 123 1801
Email: enquiries@maggies.org

Stop smoking organisations

Stopping smoking can be hard, but free services and treatments are able to help.

Quit smoking is an NHS website dedicated to helping people stop smoking. The website has information on how to quit smoking, as well as information on the NHS Quit smoking app.

Cancer Research UK has information and tips on quitting smoking.

ASH is a portal for tobacco policies. It is a campaigning public health charity that is trying to stop the harm caused by tobacco.

The British Heart Foundation is a national charity focusing on heart and circulatory diseases. Their website has tips on quitting smoking.

International organisations and websites

 SPOHNC is an American organisation with a support network for people with head and neck cancers. They have a survivor to survivor network and some useful information, including clinical trials and products that may be helpful if you've had a head and neck cancer.

This American organisation provides information about head and neck cancers.

The National Cancer Institute (NCI) is the US organisation for cancer research. It has information about all types of cancer. 

Books from libraries, bookshops or online booksellers

E Carper, K Hu and E Kuzin
Jones and Bartlett Learning, 2007
ISBN 978 0763743079

Provides doctors and patients views and answers questions about treatment and side effects, and quality of life after treatment. As it is American, not all the information will be relevant for patients in the UK.

Brenda Brady
The Mouth Cancer Foundation, 2009
ASIN B01MRHDUXI

This book has been produced by a patient Brenda Brady, and her husband, in association with the Mouth Cancer Foundation. It has tips for anyone who has difficulty chewing and swallowing food. It contains 40 pages of recipes from celebrity chefs and people who have had cancer.

Dr Terry Priestman
Sheldon Press, 2009
ISBN 978-1847090805

Gives information about chemotherapy, its side effects, and how to cope with them. Also discusses the effect of chemotherapy on everyday life, including tiredness, sex life and fertility, social life, work, holidays, exercise and diet.

Dr Terry Priestman
Sheldon Press, 2007
ISBN 978-0859699990

Gives information about radiotherapy, its side effects, and how to cope with them. Also discusses the effect of radiotherapy on everyday life, including social life, work, travel, exercise and diet.

Dr Terry Priestman
Sheldon Press, 2009
ISBN 978-1847090485

This handbook deals frankly and sensitively with the issues of cure, follow up, treatment side effects and recurrence. It looks at the support available to people who have finished their treatment.

Booklets and factsheets from other organisations

Macmillan Cancer Support has a wide range of booklets, leaflets, audiobooks and podcasts about cancer and its treatment. You can search their resources to find out what is available. 

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 information and support near you

There are organisations and support in your local area that you can access. You can ask your specialist nurse or doctor for more information about cancer services near you.

England

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

Scotland

NHS Inform gives information about illness, treatments and NHS services for people in Scotland.

Wales

NHS 111 Wales gives health advice and information for people living in Wales.

Northern Ireland

Cancer Focus Northern Ireland have a cancer information helpline and resource centre. They provide public and professional education, rehabilitation programmes and support groups for patients and relatives. 

Cancer nurse helpline: 0800 783 3339 Monday - Friday 9am to 1pm
Email: nurseline@cancerfocusni.org

Last reviewed: 
18 May 2023
Next review due: 
18 May 2026

Related links