Patient Involvement
in CanGene-CanVar

"As a Breast Cancer Patient I believe that patients are at the heart of the CanGene CanVar programme, as we are now moving from clinician driven remedial medicine to patient owned preventative wellness.  There is a strong public interest in the area of genetics, and patients, as the ultimate stakeholders, are helping develop tools and decision aids; thinking about ethics regarding release of datasets; and communicating issues and options."

"I am a survivor of two cancers and side and late effects of treatment, as well as familial conditions such as hypertension. I have been a patient advocate in research since 1998, including roles with NCRI, NIHR, NHS, Genomics England and some international and industry work too."

“Finding out I had Lynch syndrome following my womb (endometrial) cancer diagnosis meant I could take action to reduce my risk of developing other cancers and, equally as important, my family could be tested too. Finding more people with genetic cancer susceptibility conditions is key to offering them similar opportunities to prevent cancer or detect it sooner - I hope as part of the Patient Reference Panel I can help make this happen.”

"I was diagnosed with triple negative breast cancer five years ago and tested positive for BRCA 2 mutation which not only impacted on myself but also on my 3 daughters one of whom tested positive and as a results has been able to pursue preventative surgery. It is so important to engage with patients and their families to encourage testing as in my experience people are wary of what testing can mean to them but it is clearly key to preventative medicine."

"I am co-founder of a voluntary organisation that raises awareness of the BRCA genetic mutations amongst health professionals and the community. I have been lucky enough to benefit from genetic testing that has given me knowledge about my increased risk of certain cancers and the opportunity to have the choice to have preventative surgery. I got involved in CGCV so that others could be empowered with that knowledge and have the opportunity to prevent cancer too."

"My name is Frankie, I’m a student living in Edinburgh. I became involved in CanGene-CanVar to make the best of my situation as a young person with the BRCA2 gene mutation."

"My name is Julie Young, I am a carrier of Lynch Syndrome and this is where I found out about the CanGene-CanVar PRP. It is an honour to help out in any way possible because this work is so important to genetic cancer and associated prevention or treatments and also raising awareness."

"I’m passionate about improving the early diagnosis of cancer and see CanGene-CanVar as an opportunity to do this. I know from the experiences of family members what an impact this can make"

A professionally qualified banker living in East Lancashire, inherited HNPCC (MSH2) with regular screenings leading to a sub-total colectomy in 2012. Participated in CaPP2 and CaPP3, being keen to share life experiences with other families in a similar position.