If your doctor thinks you could have Lynch syndrome, you may be referred to a genetic counselor.
A genetic counselor can give you information to help you decide whether laboratory testing would be useful for diagnosing Lynch syndrome or another genetic disorder. If you choose to have the test, a genetic counselor can explain what a positive or negative result may mean for you.
What you can do
To prepare for your meeting with the genetic counselor:
- Gather your medical records. If you've had cancer, bring your medical records to your appointment with the genetic counselor.
- Ask family members who've had cancer for information. If your family members have had cancer, ask for information about their diagnoses. Write down the types of cancer, types of treatments and ages at diagnosis.
- Consider taking a family member or friend along. Sometimes it can be difficult to remember all the information provided during an appointment. Someone who accompanies you may remember something that you missed or forgot.
- Write down questions to ask your genetic counselor.
Questions to ask
Prepare a list of questions to ask your genetic counselor. Questions could include:
- Can you explain how Lynch syndrome occurs?
- How do gene mutations occur?
- How are the gene mutations associated with Lynch syndrome passed through families?
- If I have a family member with Lynch syndrome, what is the chance that I have it, too?
- What types of tests are involved in genetic testing?
- What will the results of genetic testing tell me?
- How long can I expect to wait for my results?
- If my genetic test is positive, what is the chance that I will get cancer?
- What types of cancer screening can detect Lynch-related cancers at an early stage?
- If my genetic test is negative, does that mean I won't get cancer?
- How many gene mutations are missed by current genetic testing?
- What will my genetic test results mean for my family?
- How much does genetic testing cost?
- Will my insurance company pay for genetic testing?
- What laws protect me from genetic discrimination if my genetic tests are positive?
- Is it OK to decide against genetic testing?
- If I choose to not have genetic testing, what does that mean for my future health?
- Are there brochures or other printed material that I can take with me? What websites do you recommend?
In addition to the questions that you've prepared to ask your counselor, don't hesitate to ask other questions during your appointment.
What to expect from a genetic counselor
The genetic counselor will likely ask you a number of questions about your health history and the health history of your family members. Your genetic counselor may ask:
March 13, 2015
- Have you been diagnosed with cancer?
- Have members of your family been diagnosed with cancer?
- At what age was each family member with cancer diagnosed?
- Have any family members ever had genetic testing?
- Genetics of colorectal cancer (PDQ). National Cancer Institute. http://www.cancer.gov/cancertopics/pdq/genetics/colorectal/healthprofessional. Accessed Feb. 17, 2015.
- Lindor NM, et al. Concise handbook of familial cancer susceptibility syndromes. Journal of the National Cancer Institute Monographs. 2008;38:1.
- Genetic/familial high-risk assessment: Colorectal. Fort Washington, Pa.: National Comprehensive Cancer Network. http://www.nccn.org/professionals/physician_gls/f_guidelines.asp. Accessed Feb. 17, 2015.
- Lindor NM, et al. Recommendations for the care of individuals with an inherited predisposition to Lynch syndrome: A systematic review. Journal of the American Medical Association. 2006;296:1507.
- Giardiello FM, et al. Guidelines on genetic evaluation and management of Lynch syndrome: A consensus statement by the U.S. Multi-Society Task Force on Colorectal Cancer. Gastroenterology. 2014;147:502.
- Syngal S, et al. ACG clinical guideline: Genetic testing and management of hereditary gastrointestinal cancer syndromes. American Journal of Gastroenterology. 2015;110:223.
- AskMayoExpert. Lynch syndrome. Rochester, Minn.: Mayo Foundation for Medical Education and Research; 2014.
- Making sense of your genes: A guide to genetic counseling. Genetic Alliance. http://www.geneticalliance.org/publications/guidetogeneticcounseling. Accessed Feb. 17, 2015.
- Lynch HT, et al. Milestones of Lynch syndrome: 1895-2015. Nature Reviews Cancer. http://www.nature.com/nrc/journal/vaop/ncurrent/abs/nrc3878.html. Accessed Feb. 17, 2015.
- Thibodeau SN, et al. Microsatellite instability in cancer of the proximal colon. Science. 1993;260:816.
- Vasen HF, et al. Revised guidelines for the clinical management of Lynch syndrome (HNPCC): Recommendations by a group of European experts. Gut. 2013; 62:812.
- Burn J, et al. Long-term effect of aspirin on cancer risk in carriers of hereditary colorectal cancer: An analysis from the CAPP2 randomised controlled trial. The Lancet. 2011;378:2081.
- Lindor NM. Lynch syndrome 101 (years, that is). American Society of Clinical Oncology. http://meetinglibrary.asco.org/content/114000027-144. Accessed Feb. 20, 2015.
- Lindor NM (expert opinion). Mayo Clinic, Phoenix/Scottsdale, Ariz. Feb. 19, 2015.
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