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26 November 2010
Welsh patients have recorded their own personal cancer stories for a unique website designed to help people who are worried that they may be at risk of inheriting cancer.
Developed in response to patient feedback, Storybank has been developed by the University’s Cancer Genetics Research Team, Institute of Medical Genetics, based in the School of Medicine.
Funded by cancer charity Tenovus, researchers collected and produced digital stories from patients who volunteered to share their experiences about their journey through the Cancer Genetics Service for Wales.
The patient stories cover a range of topics such as living with cancer; living with the risk of inherited cancer, and the implications this has for themselves and their families.
"Although familial cancers are rare, for people who have a number of family members with cancer they are often worried that they too will get cancer," according to Dr Rachel Iredale, Institute of Medical Genetics, School of Medicine, who led the project.
"This fear of not knowing where to turn can be extremely stressful which leaves people feeling isolated and alone.
"That is why we have developed this website. Real people telling their stories and addressing the real issues surrounding cancer, offering others a place to turn for advice and support," she added.
One patient featured on the website is Cheryle Gould from Cardiff, who tells her breast cancer story.
Cheryle says: "In 1999 I was diagnosed with breast cancer. I went in to hospital and had a lumpectomy. They offered me choices. I needed to talk to other patients that had been in the same situation, but at that time there was no one to talk to. So I went with the lumpectomy because I did not want my breast removed.
"As I came around from the operation, I was told it wasn’t good news that they had to remove the breast so I had to undergo another operation a week later, a mastectomy. I had that done and then after I had the operation and got over that, I had chemotherapy and radiotherapy, which took me off work for a year.
"I went back to work and got over it and recovered from it and then just before the five years was up in 2004, a lump appeared in my right breast. I went to the hospital and then they confirmed that I had breast cancer again. I spoke with my Consultant and he said we could get away with a lumpectomy this time. I went in and had that done. Then I went for chemotherapy and radiotherapy then for another year off work, lost my hair, which makes you feel bad, your whole body image is knocked, your confidence is knocked then.
"When I had it the second time I was gutted, not saying I took it good the first time, but I did not accept it as well as I did the first time. I am hoping that I am going to stay healthy and that I don’t get it again, but if I do then I will just deal with it again, like I have done before."
Dr Ian Lewis, Head of Research at Tenovus, added: "At Tenovus we strive to put people affected by cancer right at the heart of everything we do. We are so proud to fund the work of the Cancer Genetics Service for Wales.
"The Storybank project is vital in supporting the complex emotional and practical issues faced by people with the risk of an inherited cancer."
The new website - www.cancergeneticsstorybank.co.uk – was officially launched by Rt Hon Carwyn Jones AM, First Minister of Wales on Thursday 25th November.
First Minister of Wales, Rt Hon Carwyn Jones said: "I’m pleased to launch this innovative website. Just the mention of the word "cancer" can strike fear in many people and anything which can help allay fears surrounding the disease will be very helpful.
"Hearing from others whose lives have been affected by the disease will surely offer some comfort to others in a similar situation."
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