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With a history of cancer in the family, Marla's story highlights how a Lynch syndrome diagnosis has helped her

"Hello my name is Marla, I am 41 years old.

"When I was 32 I was diagnosed with ovarian cancer. It was a shock and I was diagnosed at a very young age so my first thoughts initially were - Why have I got this diagnosis? So, after diagnosis and after treatment I decided I wanted to really find out more about my diagnosis because for me something just didn’t quite fit together and I was really intrigued to know more about this."

Marla
Marla

“My father was diagnosed with kidney cancer five years prior to me being diagnosed with the ovarian cancer. My grandma also had breast cancer and cervical cancer and so I felt that there was some sort of connection, but I didn’t know what the connection was. I went back to my GP and asked if I could be referred to the genetics team to really find out a bit more about my cancer.

“I was later referred to the Genetics team and I saw Professor Julian Barwell in Leicester and after several tests we found out about a gene mutation, which is from my father’s side.

"So, yes it has been quite a journey in itself.

But for me finding out I had Lynch syndrome almost gave me a little bit of closure. Now I'm free from cancer it’s about concentrating on the prevention and that family members can be tested as well as my wider family too.

Marla

"The last few years having been really testing however, there have been positive outcomes too. I have been supporting other patients as a peer champion, offering advice and sharing my experience as I feel I can offer something to patients in similar situations”.

Lynch syndrome is a condition which runs through families and increases the risk of a number of tumours in the abdomen.

Through the recent formation of the Genomic Medicine Service Alliances (GMSAs), identifying and supporting families affected with Lynch syndrome is being stepped up both locally and nationally in association with Lynch Syndrome UK.

Professor Julian Barwell, University Hospitals of Leicester
Professor Julian Barwell, University Hospitals of Leicester NHS Trust

If you have being affected with a bowel, ovarian or womb cancer under the age of fifty or were over fifty at diagnosis and also have a family history of the same tumours, please ask your doctor if Lynch syndrome has been considered and excluded.

Professor Julian Barwell, Clinical Geneticist and Honorary Professor in Genomic Medicine, University Hospitals of Leicester

Professor Barwell added: "If you have this condition, please make sure you speak to a Lynch syndrome specialist every two years to ensure your ongoing care is up to date."

"Think 3, 2, 1. If you have three affected relatives, across two generations (like mum and son) and one is under 50 at diagnosis, it is really important that Lynch syndrome is considered. So much can be done these days to support families with cancer."

"Aspirin as a preventative agent for eligible patients, targeted screening and occasionally surgery can all greatly lower the burden of cancer in these families, that often have been suffering for many generations."

Information and helpful flowcharts are available to support clinicians with the implementation of the Lynch Syndrome testing and surveillance pathways.

Contact details for your relevant laboratory and clinical genetics department can be found on the relevant web page of our website.