“I learned the reason right after my diagnosis: genetic testing showed I have Lynch syndrome. It’s a hereditary condition that makes me more likely to develop multiple cancers over my lifetime. I am the first person in my family to have it.”
How having Lynch syndrome has helped me
“If there’s anything good to be said about having Lynch syndrome, it’s probably that it made me eligible to participate in a clinical trial …”
“I had always assumed that this type of potentially life-saving information would be openly shared within the family. And that the individual’s doctors would alert other family members as well. Naively, I had believed the “duty to warn” applied to genetic cancer risks.“
https://www.facingourrisk.org/blog/an-individual-doesnt-get-cancer-a-family-does
Lynch syndrome is a hereditary cancer disease resulting in an increased risk of colorectal cancer. Findings are reported from an emergency clinical service implemented during the COVID-19 pandemic utilising faecal immunochemical testing (‘FIT’) in Lynch syndrome patients to prioritise colonoscopy while endoscopy services were limited.
Fifteen centres participated from June 2020 to March 2021. Uptake was 68.8 per cent amongst 558 patients invited.
Conclusion
FIT demonstrated clinical value for Lynch syndrome patients requiring colorectal cancer surveillance …. Further longitudinal investigation on FIT efficacy in Lynch syndrome is warranted and will be examined under the ‘FIT for Lynch’ study (ISRCTN15740250).
https://academic.oup.com/bjsopen/article/7/5/zrad079/7260320?login=false
“I talk with Dr Jose Perea Garcia, Digestive Surgeon as well as cancer researcher in Madrid. We talk about how surgery has evolved and management of the Lynch Syndrome patient compared to sporadic cases. We compare some protocols and coverage in the US vs elsewhere such as Spain where there is government run. Urban vs rural is an issue everywhere. I convince Dr Garcia to offer me a ticket to an Atletico Madrid game if I get there, including if they play Real Madrid.”
https://www.aliveandkickn.org/podcast-1/episode/26556485/aliveandkickn-podcast-dr-jose-perea-garcia
The Cancer Biobank is a collection of clinical samples used in research to study how cancer develops and progresses and responds to treatment.
Engaging the patient voice in our work, and communicating our research to the public is vital to developing relevant research and education programmes.
The Cancer Centre works with cancer charities, patient advocacy groups, and scientific public education initiatives to acheive this.
Research in healthcare is important. We need to investigate novel approaches to clinical and management strategies, practices and interventions. This also applies to screening programmes. It keeps us informed of new developments and emerging trends in screening.
Research goals are:
Lynch Syndrome Ireland 