New video debate: Communicating familial cancer
Tuesday, July 27, 2010
The Eurocancercoms project is looking at the information and communication needs of cancer professionals, patients, and their families. One of the current information gaps identified by the project surrounds the risk associated with genetic breast cancer.
Most inherited cases of breast cancer are associated with two genes: BRCA1 and BRCA2. When these genes contain mutations there is an increased risk of breast cancer. Abnormal BRCA1 and BRCA2 genes may account for up to 10% of all breast cancers. Genetic testing can now establish if a patient carries the abnormal gene or not.
However as this is such a new area of medicine, there is a need to evaluate what information currently exists for patients and professionals and how it can be made better.
eurocancercoms hosted a roundtable debate at the European Breast Cancer Conference (EBCC 7). Experts in the field of communication and medical genetics: Dr Rachel Iredale, Prof Lesley Fallowfield and Carol Maddock talked to breast cancer advocates: Maureen Gilbert, Cathie Lockenwitz, Francisca Bach Kolling-Dandrieu and Roswitha Britz to discuss communicating risk and information needs of people with a genetic risk of breast cancer.
The film clips are taken from a much longer discussion, and are presented to stimulate comment and debate from the cancer community.
We would like to hear from breast cancer professionals who need to communicate risk to patients, breast cancer patients themselves, and individuals with an increased risk of breast cancer.
• What was your experience?
• How was risk communicated to you/ How do you communicate risk to your patients?
• What would have improved your experience?
We welcome any suggestions of useful information sources such as websites, forums and leaflets. Information gathered from your comments will be fed back into the project and will be used to inform recommendations around the communication of risk.
Cancer professionals watch and comment here:
To take the genetic test or not
Skills of communicators and perception risk
Information and support needs
How can we improve risk communication?
Telling the Family
Cancer patients, family and public watch and comment here:
Communicating risk in familial cancer: the European patient's perspective
For further information please contact: info@eurocancercoms.eu
We would like to thank the following patient organisations for their help:
The Danish Breast Cancer Organisation
The Federation of Breast Cancer in Spain
The Dutch breast cancer organisation www.borstkanker.nl & www.brca.nl (The advocacy site for hereditary breast and ovarian cancer)