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Share inherited cancer fears with digital stories

26 September 2009

Dr Rachel IredaleDr Rachel Iredale

People who have experienced the fear of inheriting cancer are being offered the chance to record their feelings and experiences for the benefit of others in a new digital story project organised by the University's Institute of Medical Genetics.

Researchers from the School of Medicine, with funding from Tenovus, the cancer charity, have teamed up with The Cancer Genetics Service for Wales (CGSW) to encourage former patients to volunteer and tell their stories.

The Cancer Genetics Services for Wales is an all-Wales NHS service open to anyone who has had a number of family members with cancer and are worried they may be at increased risk of inheriting cancer.

Dr Rachel Iredale from Institute of Medical Genetics, School of Medicine said: "People worried about the risks of inheriting cancer often feel isolated. Being able to access other peoples stories can be the first step in helping someone deal with the emotional fear of inheriting cancer."

The StoryBank 2010 project aims to recruit volunteers of all ages, with all types of experiences of cancer, and from all parts of Wales to share their experience of living with the risk of inherited cancer.

Their stories will be filmed and placed on a dedicated website, so others - regardless of where they are in Wales - can access and benefit from these experiences.

Cancer is a common condition but inherited cancers are rare. Only between 5 and 10% of all cancers are inherited. This means that in a group of 100 people with cancer only about five to ten of them will have inherited a known gene that increases their likelihood of developing cancer.

If someone has a family history of cancer, tests are often undertaken to see if one of these genes is present in their family.

Dr Rachel Iredale is urging former patients of The Cancer Genetics Services for Wales to come forward and record their stories for the benefit of others. Dr Iredale added: "Telling your story is not for everyone, but for those patients who would like to tell of their own experience of living with the risk of cancer are urged to get in touch."

Patients who would like to volunteer and tell their stories can contact the University's Cancer Genetics Research team on 029 20 746731.

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