I wanted to stop the ticking timebomb

Breast cancer has been a big feature in Hayley’s family. Her Mum died from the illness when Hayley was 14 and both her Auntie’s were also diagnosed. As a result, Hayley, both her sisters and her cousin have all undergone genetic testing for the BRCA gene which is proven to increase your risk of developing cancer.

Hayley, and her sister Bethany, tested positive. Their older sister was negative for the BRCA gene.

“I got tested in my early 20s and decided straight away to have a double mastectomy to reduce my risk of developing breast cancer. Some people said I was too young, but it was the best decision I ever made. I wanted it done when I was young and could cope. I wanted to stop that ticking timebomb.”

Hayley is now in her thirties, and is married with two children. Last year she decided to have her Fallopian tubes removed to further reduce her risk. Although she’s not yet ready to have her ovaries taken out, she knows that at some point she will probably go down that route too.

“When I was thinking about the salpingectomy, I didn’t know where to start but luckily I am a member of a support group called BRCA Kent and they helped me with everything I needed to know. So many of the women there had already been through it so they could share all the little things that no one else tells you.”

Hayley was 14 when her Mum died. She’d spent a lot of time in the hospital watching her Mum go through treatment. That time has had a big impact on her and she decided to pursue a career in the NHS as a result. After 18 years working in oncology as a therapeutic radiographer at Maidstone Hospital, she has seen many patients who remind her of her Mum.

“It’s always there in the back of my mind, but I know I am doing everything I can to reduce my risk and I’ve been able to support other people too who are going through the same thing including my younger sister.”

Genetic testing is supported by the South East NHS Genomic Medicine Service which covers Kent, Medway, Sussex, Surrey and South London. Our role is to embed genomics and genetic testing into routine NHS care and ensure everyone can benefit from the new research and technology that is now available.

Hayley hasn’t had cancer, but she does carry the BRCA gene which can increase her risk of developing cancer. Only 10% of breast cancer cases, as well as other cancers such as ovarian and bowel cancer, are caused by an inherited gene.

If people have a strong family history where there are multiple cases of early onset breast or ovarian cancer, then they may benefit from genetic testing. However, if there is no evidence of cancer in the family, then there is no need to have a genetic test.

For people who have the BRCA gene, or other risk increasing genetic changes, then other family members can be offered a predictive genetic test to determine their risk.

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With any Whole Genome Sequencing (WGS) test ordered, a Record of Discussion (RoD) form will also need to be submitted. This document is to record the patient’s consent for genomic testing and their choice on taking part in research. Guidance on the patient choice conversation can be found here
This RoD form will be available for clinicians to download from this webpage. Once completed with the patient, it can be send to the lab with the corresponding test order form and sample.
Tests available to order will be listed in the National Genomic Test Directory. A test order form will soon be made available for clinicians on this webpage to download and complete. This form will include the address of the laboratory that the appropriate sample and completed form needs to be sent to.
Until the new Genomic Laboratory Service goes live, please continue to follow existing test order processes.
Later this year, the online test ordering tool for Whole Genome Sequencing will be integrated into the National Genomics Informatics System (NGIS) and clinicians will be able to search or filter to find a clinical indication, confirm eligibility criteria and start the test request process for their patient.