One of our members was recently invited to present at a Yorkshire Cancer Research Bowel Cancer Improvement Programme Nurses workstream educational session to provide input from a patient experience on receiving a Lynch Syndrome diagnosis.
Since NICE guidance was published in 2017 recommending that everyone diagnosed with bowel cancer be tested for the genetic condition, Lynch Syndrome has been high on the national agenda.
To ensure that Lynch Syndrome is understood by all members involved in the care of bowel cancer patients, The Yorkshire Cancer Research Bowel Cancer Improvement Programme held an educational session on the condition for Clinical Nurse Specialists. Our PPG member Katie McSweeney attended the event to provide a first hand account of her diagnosis and how her CNS was, and still is, an instrumental part of her care.
“My support for my cancer care have always been absolutely brilliant from my colorectal cancer nurse. She has always been the person I can turn to whenever I had any kind of problem at all she has always been an absolute source of comfort and super diligent. She makes me feel extremely important which I think is so vital.”
As well as talking about the vital role the CNS plays in people’s cancer care Katie also emphasised the need to have a more joined up approach to the care that people receive, especially those with Lynch Syndrome who not only have an increased risk of bowel cancer but also endometrial cancers.
“I wanted more of a multidisciplinary team approach, I wanted there to be a connection between my treatment and a connection between other teams like the gynaecology team or the fertility team and I wanted it to be much smoother, which I think is important for the future”.
As her own diagnosis of bowel cancer coincided with the NICE guidelines coming into affect, Katie’s Lynch Syndrome was only discovered after initiating discussions with her oncologist and so she stressed the importance of the genetic testing and that how the screening of all bowel cancer patients is a big leap forward in bowel cancer care.
“The thing I really wanted was reactive family testing and to trigger events to protect the rest of my family.”
Lynch Syndrome is an inherited condition that significantly increases the risk of a person developing bowel cancer by up to 80%. It is estimated that 175,000 people in the UK have Lynch Syndrome however due to the lack of testing, only about 5% of cases are known. As Lynch Syndrome is inherited, the testing of all patients diagnosed with bowel cancer for the condition means that family members who also have the condition can be identified and can then be placed under surveillance to receive regular colonoscopies to reduce their risk of dying from the disease in the future.