After approximately three months you will be given your genetic test results. You have been waiting for this and these three months might feel like a long time. Now that you have spoken to your team and have your results, you might have some questions.
Please read the information below as many times as you need so you can understand your results and its implications for you and your family and, most importantly, what can you do to reduce your prevent cancer and balance out the risk.
The main concern in Lynch syndrome is colorectal (bowel) cancer. For women, endometrial (womb) cancer is also a concern, and to a lesser degree ovarian cancer. There is small increase in the likelihood of developing a few other cancers: pancreatic, kidney, urinary tract, skin, brain and gastrointestinal cancers. However, these other cancers are seen only occasionally, and the increased risk is small – generally less than a 5% increase if you compare this risk to rest of the general population.
The risk or likelihood of developing cancer depends on three factors: age, gender and which gene is implicated:
The likelihood of developing cancer is very low at an early age, including for people with Lynch syndrome. Cancer prevention bowel check-ups for people living with Lynch syndrome start at the age of 25-35. The likelihood of developing cancer increases with age, so people with Lynch syndrome will have bowel checks every two years.
Men tend to have a higher risk of developing colorectal cancer as compared to women. However, women have the additional risk of endometrial and ovarian cancer.
Different genes have a different likelihood of contributing to the development of cancer. There are some websites that can give you percentages of risk. It can be difficult to look at graphs and make sense of the information, especially when the information is personal to you. If you do wish to calculate your risk, it is recommended to do this with a healthcare professional, who can interpret and personalise the information for you and answer your questions appropriately. However, if this is something that you would like to look at on your own, you can visit the Prospective Lynch Syndrome Database.