When a loved one is diagnosed with cancer, it can raise concerns and questions for other family members. Should you get tested? What are the risks? And most importantly, what can be done about it? We’ll answer these questions in this blog.
When someone in your family is diagnosed with cancer, it can be a shock. And if you find out their cancer might be tied to Lynch syndrome, it can raise even more questions about your own health risks and what you should do next. If you’re feeling overwhelmed by your family member’s positive diagnosis and wondering whether you should get tested, this blog is for you.
Understanding Lynch Syndrome
Lynch syndrome, also known as hereditary non-polyposis colorectal cancer (HNPCC), is caused by inherited mutations in certain genes. People with Lynch syndrome have a higher risk of developing cancers at a younger age compared to the general population. These cancers include colorectal, endometrial, ovarian, stomach and several others. Because Lynch syndrome is inherited, family members of someone diagnosed with the condition are at a higher risk of having it themselves.
Here’s a more detailed look at Lynch syndrome:
Genetic causes: Lynch syndrome is usually caused by mutations in one of five genes – MLH1, MSH2, MSH6, PMS2, and EPCAM. These genes are part of the DNA mismatch repair system, which corrects errors during DNA replication. When they don’t function properly, the risk of cancer increases.
Inheritance: Lynch syndrome is inherited in an autosomal dominant pattern, meaning a person needs only one copy of the mutated gene from a parent to be at risk. If one parent has a Lynch syndrome mutation, each child has a 50% chance of inheriting it.
Cancer risks: The most common cancer associated with Lynch syndrome is colorectal cancer, with a lifetime risk ranging from 50% to 80%. Women with Lynch syndrome also face a high risk of endometrial cancer, with a lifetime risk of about 40% to 60%. Other cancers, such as ovarian, stomach, and urinary tract cancers are also more prevalent among individuals with Lynch syndrome.
Testing and prevention: People with Lynch syndrome often undergo regular cancer screenings starting at an earlier age because of their inherited risk. Colonoscopies, for example, are typically recommended every 1 to 2 years starting in early adulthood. In some cases, risk-reducing surgeries or other preventive measures may be considered.
Who Should Get Tested?
If your family member has been diagnosed with a type of cancer that is related to Lynch syndrome, it is recommended that you get tested to determine if you carry the same gene mutation. Your healthcare provider can help you understand the risks, the testing process and the implications of a positive or negative result.
Testing is often recommended if:
You have a family history of cancers commonly associated with Lynch syndrome
Your family member has tested positive for a mutation linked to Lynch syndrome
You or a close relative developed cancer at an unusually young age
The Benefits of Testing
The good news is, if you test positive for a Lynch syndrome-related mutation, there are steps you can take to manage your risk. You may need regular cancer screenings, such as colonoscopies, starting at an earlier age and at more frequent intervals. Some people choose to have preventative surgeries to reduce the risk of certain cancers. Additionally, knowing your genetic status can help inform other family members about their own risks.
Some of the benefits of testing include:
Tailored monitoring and prevention: Knowing you have Lynch syndrome can guide healthcare providers in creating a personalized monitoring and prevention plan. This might include more frequent screenings or specific preventive measures to reduce cancer risk.
Early detection: Identifying Lynch syndrome through genetic screening can lead to earlier cancer detection and, in turn, more effective treatment and improved outcomes.
Informed family communication: A positive test result provides valuable information for family planning and allows you to communicate genetic risks to other family members, helping them make informed health decisions.
Preventive surgeries: For certain cancers associated with Lynch syndrome, preventive surgeries might be an option. Testing helps identify who might benefit from these procedures.
Empowerment through knowledge: Understanding your genetic risks can give you a sense of control over your health, allowing you to make informed decisions and take proactive steps to reduce your risk of developing cancer.
Emotional Support
Learning that you might be at a higher risk for cancer can be overwhelming. It’s natural to feel a range of emotions, from fear to anxiety to sadness.
Remember that you’re not alone – many families have faced similar situations, and support is available. Talking with a mental health professional can be helpful as you navigate these emotions. Also, consider joining support groups for families dealing with Lynch syndrome or hereditary cancers. Some groups and events you can potentially join are:
Taking Action
If you think you should get screened for Lynch syndrome, the first step is to talk to your healthcare provider or a genetic counselor. They can guide you through the process and help you understand the next right steps.
Finding out a family member has cancer and that you may be at risk too can be devastating. But early detection and preventive measures can make a significant difference in managing the cancer risks associated with Lynch syndrome.
By getting tested for the genetic mutation, you gain valuable knowledge that can help you and your healthcare team make informed decisions about how to protect and maintain your health.
