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I’ve gotten a positive Lynch syndrome diagnosis. Now what?

Receiving a positive Lynch syndrome diagnosis comes with a world of questions, concerns and unknowns about what the future holds. However, an answer about LS means a shift in focus on the path instead of the problem. So, what is that path?

Lynch syndrome, also known as hereditary nonpolyposis colorectal cancer (HNPCC), is a hereditary condition that increases the risk of developing certain cancers, particularly colorectal and endometrial cancers. It’s caused by mutations in specific genes that are responsible for repairing DNA errors. A positive diagnosis for Lynch Syndrome means that you have inherited one of these genetic mutations.

Here are two important next steps you can take after receiving a positive LS diagnosis.

Step #1 – Talk to your family 

Lynch syndrome is an autosomal dominant condition, which means it’s inherited with 50% probability. Informing your family about the diagnosis allows them to make informed decisions about their own health.

Initiating this conversation is delicate and can be challenging. Here are a few tips for having this conversation with your family:

  • Choose the right setting: Find a quiet and comfortable setting where you can have an open and private conversation. This ensures that everyone can focus on the discussion without distractions.

  • Be honest and direct: Start the conversation by being honest and direct about your Lynch syndrome diagnosis. Clearly state that you have received positive test results for Lynch syndrome and explain what this means for your loved one. 

  • Share basic information: Offer your family member what you know about Lynch syndrome, emphasizing that it’s a hereditary condition that increases the risk of certain cancers. 

  • Express your feelings: Share your own feelings about the diagnosis. Acknowledge any concerns or fears you may have, but also express your commitment to managing the situation proactively.

  • Encourage open communication: Emphasize that you are sharing this information because you care about your family’s well-being. Encourage open communication and let them know that you are available to answer questions as they form their own plan of action.

  • Provide resources: Offer to share any informational resources about Lynch syndrome that you received from your doctor, such as pamphlets, websites or articles, to help your family members better understand the condition.

  • Highlight the importance of testing: Stress the importance of Lynch syndrome testing for family members. Explain that knowing their own diagnosis can empower them to make informed decisions about their health and well-being.

Step #2 – Talk to your healthcare provider (HCP)

Your HCP is likely already involved in this discussion and diagnosis. Still, it’s important to keep the conversation going. Now that you have an answer about Lynch syndrome, you can create a plan for monitoring and managing your health. Here are some specific things you can discuss: 

  • Your unique risk: Work with your HCP to assess your individual cancer risk based on your Lynch syndrome diagnosis, family history and other relevant factors. Discuss the potential impact of Lynch syndrome on various organs and systems, including the colon, endometrium, ovaries, stomach, small intestine and urinary tract.

  • Screening recommendations: Your HCP will be able provide guidance on the recommended surveillance and screening protocols tailored to your unique situation. Understand the frequency and types of screenings required, such as colonoscopies, endoscopies, and other imaging studies, to detect any potential issues at an early, more treatable stage. 

  • Proactive strategies: Explore and discuss various proactive strategies to manage and reduce the risk of cancer associated with Lynch syndrome. This may involve lifestyle modifications, medication options, and, in some cases, prophylactic surgeries. Your HCP can explain the potential benefits and risks associated with each option.

  • Emotional and psychological aspects: A Lynch syndrome diagnosis can have emotional and psychological implications. Your HCP can provide resources or referrals to support groups, therapists or counselors who specialize in genetic conditions and cancer.

  • Genetic counseling: Consider seeking genetic counseling to delve deeper into the hereditary aspects of Lynch syndrome. A genetic counselor can provide additional insights into family planning, discuss testing options for family members, and help you make informed decisions about your health.

  • Long-term planning: Work collaboratively with your HCP to develop a long-term plan for managing Lynch syndrome. This plan should include regular check-ups, screenings and adjustments based on evolving research and medical advancements.

Remember – You’re not alone 

Lynch syndrome support is always available. Talking with a mental health professional can be helpful as you navigate your diagnosis. Also, consider joining support groups for individuals and families dealing with Lynch syndrome or hereditary cancers. Some groups and events you can potentially join are:

Conclusion

While a positive Lynch syndrome diagnosis may present challenges, understanding the next steps is crucial for proactive management. Engaging in open communication with family members, seeking guidance from healthcare professionals and embracing preventative strategies will empower you to take control of your health.

Remember, you are not alone on this journey, and there is support available to guide you through the challenges ahead.

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Receiving a positive Lynch syndrome diagnosis comes with a world of questions, concerns and unknowns about what the future holds. However, an answer about LS means a shift in focus on the path instead of the problem. So, what is that path?

Lynch syndrome, also known as hereditary nonpolyposis colorectal cancer (HNPCC), is a hereditary condition that increases the risk of developing certain cancers, particularly colorectal and endometrial cancers. It’s caused by mutations in specific genes that are responsible for repairing DNA errors. A positive diagnosis for Lynch Syndrome means that you have inherited one of these genetic mutations.

Here are two important next steps you can take after receiving a positive LS diagnosis.

Step #1 – Talk to your family 

Lynch syndrome is an autosomal dominant condition, which means it’s inherited with 50% probability. Informing your family about the diagnosis allows them to make informed decisions about their own health.

Initiating this conversation is delicate and can be challenging. Here are a few tips for having this conversation with your family:

  • Choose the right setting: Find a quiet and comfortable setting where you can have an open and private conversation. This ensures that everyone can focus on the discussion without distractions.

  • Be honest and direct: Start the conversation by being honest and direct about your Lynch syndrome diagnosis. Clearly state that you have received positive test results for Lynch syndrome and explain what this means for your loved one. 

  • Share basic information: Offer your family member what you know about Lynch syndrome, emphasizing that it’s a hereditary condition that increases the risk of certain cancers. 

  • Express your feelings: Share your own feelings about the diagnosis. Acknowledge any concerns or fears you may have, but also express your commitment to managing the situation proactively.

  • Encourage open communication: Emphasize that you are sharing this information because you care about your family’s well-being. Encourage open communication and let them know that you are available to answer questions as they form their own plan of action.

  • Provide resources: Offer to share any informational resources about Lynch syndrome that you received from your doctor, such as pamphlets, websites or articles, to help your family members better understand the condition.

  • Highlight the importance of testing: Stress the importance of Lynch syndrome testing for family members. Explain that knowing their own diagnosis can empower them to make informed decisions about their health and well-being.

Step #2 – Talk to your healthcare provider (HCP)

Your HCP is likely already involved in this discussion and diagnosis. Still, it’s important to keep the conversation going. Now that you have an answer about Lynch syndrome, you can create a plan for monitoring and managing your health. Here are some specific things you can discuss: 

  • Your unique risk: Work with your HCP to assess your individual cancer risk based on your Lynch syndrome diagnosis, family history and other relevant factors. Discuss the potential impact of Lynch syndrome on various organs and systems, including the colon, endometrium, ovaries, stomach, small intestine and urinary tract.

  • Screening recommendations: Your HCP will be able provide guidance on the recommended surveillance and screening protocols tailored to your unique situation. Understand the frequency and types of screenings required, such as colonoscopies, endoscopies, and other imaging studies, to detect any potential issues at an early, more treatable stage. 

  • Proactive strategies: Explore and discuss various proactive strategies to manage and reduce the risk of cancer associated with Lynch syndrome. This may involve lifestyle modifications, medication options, and, in some cases, prophylactic surgeries. Your HCP can explain the potential benefits and risks associated with each option.

  • Emotional and psychological aspects: A Lynch syndrome diagnosis can have emotional and psychological implications. Your HCP can provide resources or referrals to support groups, therapists or counselors who specialize in genetic conditions and cancer.

  • Genetic counseling: Consider seeking genetic counseling to delve deeper into the hereditary aspects of Lynch syndrome. A genetic counselor can provide additional insights into family planning, discuss testing options for family members, and help you make informed decisions about your health.

  • Long-term planning: Work collaboratively with your HCP to develop a long-term plan for managing Lynch syndrome. This plan should include regular check-ups, screenings and adjustments based on evolving research and medical advancements.

Remember – You’re not alone 

Lynch syndrome support is always available. Talking with a mental health professional can be helpful as you navigate your diagnosis. Also, consider joining support groups for individuals and families dealing with Lynch syndrome or hereditary cancers. Some groups and events you can potentially join are:

Conclusion

While a positive Lynch syndrome diagnosis may present challenges, understanding the next steps is crucial for proactive management. Engaging in open communication with family members, seeking guidance from healthcare professionals and embracing preventative strategies will empower you to take control of your health.

Remember, you are not alone on this journey, and there is support available to guide you through the challenges ahead.