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.
The new website – www.cancergeneticsstorybank.co.uk – will be officially launched by Rt Hon Carwyn Jones, First Minister of Wales on Thursday 25th November between 6-8 at the University of Glamorgan’s ATriuM campus in Cardiff.
Storybank has been developed by Cardiff University’s Cancer Genetics Research Team in conjunction with the University of Glamorgan’s Storyworks Team. The project, funded by the Cancer Charity, Tenovus, saw researchers from both teams collect and produce digital stories from patients who volunteered to share their experiences about their journey through the Cancer Genetics Service for Wales.
First Minister of Wales, 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.”
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, from Cardiff University’s Institute of Medical Genetics, 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’s story featured on the website is Cheryle Gould from Cardiff, who tells her own 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.”
Karen Lewis, Director, Storyworks , University of Glamorgan added: “Through our work with Rachel and her team, not only have we been able to give patients a voice but also provide those who are worried that they may be at increased risk of inheriting cancer with a real-life source of information and support.”
“It is hoped the website will be accessed by current and future patients, as well as the general public”.
Ruth Walker, Executive Director of Nursing at Cardiff and Vale University Local Health Board said: “The Storybank is a wonderful idea. When cancer touches your life it is usually devastating and even though the staff at Cardiff and Vale University Health Board are vastly experienced and go to great lengths to offer care and support, hearing from people who have been down that road themselves can help patients, staff and their families to understand the journey.
“The project is a perfect example of various bodies coming together to help make things better for patients which is the driving force for us here at Cardiff and Vale UHB.”
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.”
