Surveillance and Compliance and Management, oh my!

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You have been diagnosed with Lynch Syndrome.  It may seem absolutely overwhelming.., there is so much to learn and so much to think about.  

Because persons with Lynch Syndrome have a higher risk of different types of cancer, it is important for them to be vigilant in managing and monitoring their health. Part of this process is called surveillance and it refers to watching the condition of different organs in the body that are predisposed (may have a higher risk) of cancer.

Some of the management steps (Lynch Syndrome International, 2013) that your physician might review with you to monitor your health might include:

• Colonoscopy: A procedure where a small tube with a camera in it (called a scope) is inserted into the colon through the anus. This allows a physician to look for changes and abnormalities.  
• Esophagogastroduodenoscopy: A procedure where a small tube with a camera in it (called a scope) is inserted through the mouth, down the esophagus, into the stomach and then into the first part of the small intestine.  This allows a physician to look for changes and abnormalities.  
• Endometrial Sampling for women: The endometrial sampling involves a preparation that is similar to getting a pap smear except that an instrument is inserted into the uterus and takes a tiny piece (biopsy) of the uterine lining.  The biopsies are sent to the lab and microscopically assessed for cancerous changes
• CA-125 for women: This is a blood test that is called Cancer Antigen 125.  The test measures a type of protein that can be elevated in cases of different cancers such as endometrial or ovarian, as well as, some benign conditions.
• Urine Cytology:  This involves a collection of a urine sample that is sent to the lab. Cells from the urinary tract are assessed microscopically for cancerous changes
• Dermatological screening: This involves a full body screening by a dermatologist

While there is an entire team of health professionals that includes physicians, physician’s assistants, nurses, geneticists, lab technicians and other personnel to help monitor and address changes,  responsibility for your health ultimately falls to one person.., YOU.

That is where compliance comes in. Compliance is doing what needs to be done to manage your own health.  

There are many tests available to monitor your health status and many professionals behind those tests who are ready and waiting to help you actively monitor Lynch Syndrome.  A person has no control over their inheritance of the genetic disorder that causes Lynch Syndrome but they have complete control over the surveillance and management through their own compliance with recommendations for those with Lynch Syndrome.

What can you do?  

• Become empowered through education, participation and control (Powers & Bendall, 2003).  
• Learn about your condition and the guidelines for monitoring and participating in your care.  
• Make recommended lifestyle changes and keep appointments to actively monitor your health and affect outcomes.

March 22nd is Lynch Syndrome Hereditary Cancer Public Awareness Day. Mark this day by reaching out for information.  Lynch Syndrome International is an all volunteer organization with resources for persons with Lynch Syndrome and the healthcare professionals who are helping with their surveillance and management. Their website is www.lynchcancers.org

References

Lynch Syndrome International (2013) Identifying and Caring for Those with the Lynch Syndrome. Brochure.  Vacaville, CA. www.lynchcancers.org

Powers, T., & Bendall, D. (2003). Improving health outcomes through patient empowerment. Journal of Hospital Marketing & Public Relations. 15(1), 45-59.