She With Lynch Syndrome

The future is bright for those of us with Lynch syndrome and, most likely, for most of us with a hereditary cancer syndrome.

She and all of the new medical advances for those with Lynch syndrome give me hope for if and when I ever develop cancer.

Urine test can detect cancers in Lynch Syndrome patients

“People with Lynch Syndrome can benefit from screening programmes that enable cancers to be found at an early stage when they can be cured “

Patients with LS are at high risk of bowel and endometrial cancers. The risk of urothelial cancer is less well recognised, with a lifetime risk of up to 28.5%, depending on which gene is involved.

This means that those LS patients who have an underlying defect in the MSH2 gene are more than 10 times as likely to get a potentially curable cancer in their urinary tract than the general population.

Failure to screen for these cancers means that even after being diagnosed with the condition, one in 20 LS patients will die of urothelial cancer, often at a young age.

The English National Lynch syndrome transformation project: An NHS Genomic Medicine Service Programme

The main barriers to universal testing identified relate to funding streams and systematic approaches to testing. 

Conclusions: This ongoing transformational project is supported by high levels of engagement across stakeholders in England. Despite barriers, significant quality improvement has been implemented, facilitating systematic delivery of universal testing for LS nationally, with reduction in variation in care.

Where are we in Ireland in relation to achieving to Universal Testing??

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