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Resources and organisations for advanced lung cancer

There are support organisations and resources available for people living with advanced lung cancer.

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.

Organisations that provide equipment

You can borrow toileting aids or a wheelchair short term from The British Red Cross. This might be for free, or they may ask for a donation in your area.

There are many commercial companies that sell equipment online, via catalogues or in shops. Here are some tips when shopping around:

  • Ask an occupational therapist what they think might be best to meet your needs – your Nurse Specialist, district nurse or GP can refer you to an occupational therapist if you don’t have one
  • Compare prices between different companies
  • Check if you can return the item if it’s not exactly what you are looking for (this is usually if it is unused and in its original packaging)
  • Look for a number to call if you are unsure about how to safely fit or use the equipment

The Disabled Living Foundation has an advice and information service on their website. This can help you when you’re looking for a specific piece of daily living equipment. They offer impartial advice and suggestions of equipment from reputable companies. You can also call them for advice.

Red Cross services vary in different parts of the country. They provide medical equipment, transport and hospital escort services, home emergency personal care and home respite care. There are branches throughout the UK.

Telephone: 0844 871 111

Email: information@redcross.org.uk

The Disabled Living Foundation gives information and advice on equipment and aids to help with daily living.

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

Lung cancer support organisations

The British Lung Foundation gives information on all types of lung conditions. It runs support groups across the country. It produces a newsletter and other publications, and raises funds for research into lung disease.

Tel: 03000 030 555 (Monday to Friday, 9am to 5pm)

The Roy Castle Lung Cancer Foundation is a UK charity dedicated to defeating lung cancer. It funds research into early diagnosis and provides support to patients and their families. It also helps people to stop smoking and provides anti smoking education materials for children and young people.

People affected by lung cancer can share experiences through the foundation's network of support groups and the online discussion forum: Talk and Share.

Lung Cancer Helpline: 0333 323 7200 (9am to 5pm, Monday to Friday)

ALK Positive Lung Cancer (UK) is a charity established by a group of patients and carers. They provide support and advocacy for people affected by ALK positive non small cell lung cancer. They have a Facebook group and organise a patient forum every few months where affected people can meet up face to face.

Email: hello@alkpositive.co.uk

Public Health England (PHE) is the main resource for advice about radon in the UK. It gives information about radon through it's website. You can order a radon risk report. And you can buy a kit to measure radon gas levels in your home.

Telephone: 01235 822 622

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

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.

The Gatehouse
10 Dumbarton Road
Glasgow
G11 6PA

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

The Medical Advisory Service provides a telephone helpline and online advice on all medical and healthcare matters.

Tel: 020 8994 9874 (6pm to 8pm weekdays Monday to Friday)

Email: office@medicaladvisoryservice.org.uk

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

The ACS provides information and support for people affected by cancer. As it is an American website, not all the information is relevant for a UK audience.

The British Association for Counselling and Psychotherapy provides information about therapy and counselling. On its website you can look for qualified therapists in your area.

Telephone: 01455 883300 (open Monday to Friday, 9am to 5pm)

Email: bacp@bacp.co.uk

College of Sexual and Relationship Therapists (COSRT) provides information about what help and therapy is available for sexual difficulties.

Telephone: 020 8543 2707
Email: info@cosrt.org.uk

Offers private and confidential counselling, and psychosexual therapy to help with relationship problems. They provide counselling over the phone, through a webcam or face to face at a Relate centre. They also have live chat on their website.

Booking line: 0300 003 0396 (Monday-Thursday: 8am to 8pm,  Friday: 8am to 6pm, Saturday: 9am to 1pm)

Relationships Scotland provides relationship counselling, family mediation, child contact centres and other family support services across all of mainland and island Scotland.

InfoLine: 0345 119 2020 (open Monday to Friday 9am to 5pm)

Email: enquiries@relationships-scotland.org.uk

Hospice UK answers enquiries about any aspect of hospice care. The website includes a directory of hospice services in the UK and Ireland.

34 - 44 Britannia Street
London
WC1X 9JG

Telephone: 0207 520 8200

Marie Curie runs 9 centres (hospices) throughout the UK. And a nationwide Marie Curie nursing service, providing care for patients in their own homes throughout the day or night, free of charge.

Head Office:
89, Albert Embankment
London
SE1 7TP

Support line: 0800 090 2309. For emotional support and practical advice about terminal illness, including for family and friends. The support line is open 8am - 6pm Monday to Friday and 11am - 5pm on Saturday.

Stop smoking organisations

Smokefree is a website dedicated to helping people stop smoking. The website is staffed by counsellors who can give you advice on how to stop smoking. They can also send you an information pack.

Books about lung cancer

J H Schiller and A Cipau
Jones and Bartlett Publishers, 2012
ISBN 978-1449687571

This book gives information about treatment options, quality of life after treatment, and living with lung cancer. It is an American book so some issues covered are not relevant to a UK reader.

Vladimir Lange
Lange Media, 2013
ISBN 978-0981948973

This book gives detailed information about lung cancer, treatments, and the feelings and emotions people may have. It contains stories from people who have had lung cancer.

It is an American book so some information is not relevant to UK readers.

Find out what smoking does to your body, and how you can give yourself the best chance of quitting.

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 9780859699990

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.

Information about eating well

Jane Freeman
Sheldon Press, 2012
ISBN 9781847091413

Written by a cancer dietitian, this is a practical handbook for people with cancer. Filled with helpful tips and recipes.

A Bloch and others
American Cancer Society, 2010
ISBN 978-0944235782

An American book but most of the information is relevant to the UK. It covers issues such as preventing weight loss and coping with dehydration, fatigue, and infection. It also discusses eating problems and digestion issues, such as swallowing problems, feeling sick and dealing with mouth sores. Focuses on survivorship and how to eat well after treatment.

Videos of people's stories

Hear what it's like to live with and beyond cancer, from people who have shared their personal stories on film.

Healthtalk has an online library of interviews with people who have lived for 5 years or more after a cancer diagnosis. See what they say about lifestyle choices, physical effects, work, family and more. 

Find local cancer information and support

NHS Choices helps you to find local cancer information and support.

Information and help