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Preparing for your appointment
By Mayo Clinic staffIf 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 your future.
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.
- Take a family member or friend along, if possible. Sometimes it can be difficult to absorb all the information provided during an appointment. Someone who accompanies you may remember something that you missed or forgot.
- Write down questions to ask the 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, does that mean 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?
- 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 any brochures or other printed material that I can take with me? What Web sites do you recommend?
In addition to the questions that you've prepared to ask, don't hesitate to ask questions during your appointment at any time that you don't understand something.
- Genetics of colorectal cancer (PDQ): Health professional version. National Cancer Institute. http://www.cancer.gov/cancertopics/pdq/genetics/colorectal/healthprofessional. Accessed Dec. 16, 2009.
- Lindor NM, et al. Concise handbook of familial cancer susceptibility syndromes. Journal of the National Cancer Institute Monographs. 2008;38:1.
- Lynch HT, et al. Review of the Lynch syndrome: History, molecular genetics, screening, differential diagnosis and medicolegal ramifications. Clinical Genetics. 2009;76:1.
- 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.
- Offit K, et al. Genetic factors: Hereditary cancer predisposition syndromes. In: Abeloff MD, et al. Abeloff's Clinical Oncology. 4th ed. Philadelphia, Pa.: Churchill Livingstone; 2008:180.
- Koornstra JK, et al. Management of extracolonic tumours in patients with Lynch syndrome. Lancet Oncology. 2009;10:400.
- Making sense of your genes: A guide to genetic counseling. National Society of Genetic Counselors. http://www.nsgc.org/client_files/GuidetoGeneticCounseling.pdf. Accessed Dec. 16, 2009.
- Lindor NM (expert opinion). Mayo Clinic, Rochester, Minn. Dec. 19, 2009.
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