Lots to digest including her thoughts on total v partial colectomy for people with Lynch Syndrome.
Kids learn as much from what we do as from what we say
LS is caused by a missing or damaged MMR (miss match repair) gene. Generally, people have two copies of this gene which protect new cell development from errors that could lead to a mutation. If a mistake is found, then the cell is told to destroy itself. In LS we only have one working copy of this gene so if that becomes damaged or broken, we run the risk of an abnormal cell being created which could eventually lead to a cancer. People with LS have this missing gene in every single cell of their body.
The greatest risk cancers in LS are bowel and endometrial. There are also others with lower risk but still significant compared to that of the general population. You can use this tool to determine your risk from different types of cancer. http://www.lscarisk.org/
LS is no longer considered rare with around 1 in every 300 people affected and of those, only 5% will know they carry this genetic condition. Left undiscovered it has the power to devastate generations of families.
The good news is, screening and preventative surgery are weapons in the fight against LS and are proven to save lives. Knowing you carry LS is both a blessing and a curse. Knowledge really is power – which can help you stay safe and well.
(thanks to Lynch Syndrome UK)
Cancer genetic services in an Irish context: perspectives of healthcare professionals, patients and members of the public: Details of an Irish Cancer Society Funded Project
Cancer is caused by certain changes to genes (genetic mutations) that control the way our cells work, most especially how cells grow and divide. Some of these changes are inherited or familial genetic mutations, which are changes that are passed down through families from one generation to the next. These type of changes may increase a persons risk of developing cancer, and are known to play a major role in about 5 to 10 percent of all cancers. A patient with a known history of certain cancers or family members of individuals diagnosed with certain cancers can be referred to “Cancer Genetic Services” for the assessment of their cancer family history, and potential suitability for cancer genetic testing. Such genetic testing can: help an individual understand whether an inherited health condition may affect them, their children or other family members; show if the individual is at higher risk of getting certain health conditions, including some types of cancer, and guide doctors in deciding what treatments best suit the person diagnosed with certain types of cancer. Cancer Genetic Services can support families with a history of these types of inherited mutations by providing specialist advice. Thus access to cancer genetic services is an important component of the health services for patients with cancer and their families.
This study seeks to hear about healthcare professionals, patients, family members and members of the public experiences of cancer genetic services in an Irish context. Study findings can help to inform future research or policy developments in this area. If you are a health care professional, patient, family member or member of the public with experience of cancer genetic services in an Irish context, we are interested in hearing from you.
If you are interested in:
· Partaking in a telephone conversational interview please contact Professor Josephine Hegarty, University College Cork at J.Hegarty@ucc.ie or text 0874177062
· Completing an online survey- please click the relevant survey link below.
PATIENTS, FAMILY MEMBERS AND MEMBERS OF THE PUBLIC who have experience with cancer genetic services please click on this link https://www.surveymonkey.com/r/CancerGeneticsPPI
MEMBERS of the MULTIDISCIPLINARY TEAM who have sought access to cancer genetic services for their patients click on this link https://www.surveymonkey.com/r/cancergeneticsMDT
Thank you for taking time to read this message; your participation in this research project would be really appreciated. Please feel free to pass this email on to others with an interest in this area.
If you need any further information or would like to talk to a nurse please contact the Irish Cancer Society Cancer Nurseline Freefone on 1 800 200 700 or visit https://www.cancer.ie/about-us/contact-us for confidential advice, support and information on any cancer related issue.