Lynch syndrome

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As a person with Lynch syndrome, what lifestyle changes can I make to decrease my risk for cancer?

Taking care of yourself can improve your overall health. You can take control of your health by exercising, eating a healthy diet, and maintaining a healthy weight. It is also important to avoid tobacco products since smoking increases the risk of several types of cancer and other health conditions.

References
  • Kohlmann W, Gruber SB. Lynch Syndrome. 2004 Feb 5 [Updated 2018 Apr 12]. In: Adam MP, Ardinger HH, Pagon RA, et al., editors. GeneReviews® [Internet]. Seattle (WA): University of Washington, Seattle; 1993-2020. Available from: https://www.ncbi.nlm.nih.gov/books/NBK1211/
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Is prenatal testing available for Lynch syndrome?

How often is Lynch syndrome not inherited?

What is the difference between a somatic mutation and a germline mutation?

Can my child get tested for Lynch Syndrome?

How can I make sure that I am getting all possible Lynch Syndrome screening?

My job wants to know about my genetic test results. Should I tell them?

I have Lynch Syndrome. When should I get a colonoscopy?

I have Lynch Syndrome. Will I definitely get cancer?

Is DNA banking available to people with Lynch syndrome?

Is prenatal testing available for Lynch syndrome?

Preimplantation genetic diagnosis (PGD) is available for Lynch syndrome if one of the parents is known to carry a Lynch syndrome gene mutation. PGD is performed on embryos produced through in vitro fertilization (IVF). PGD allows for parents to only implant embryos into the mother's uterus that do not have the gene mutation. PGD is still a very costly procedure though, and it is not guaranteed to lead to pregnancy every time.

Some labs may accept prenatal specimens for genetic testing if a parent is known to carry a Lynch syndrome gene mutation. With prenatal testing, the baby's DNA is tested during the pregnancy to determine whether the baby has the gene mutation. The procedures available to obtain the baby's DNA during a pregnancy are associated with a risk of pregnancy loss. Prenatal testing is not commonly utilized or recommended for adult onset conditions like Lynch syndrome.

References
  • Kohlmann W, Gruber SB. Lynch Syndrome. 2004 Feb 5 [Updated 2018 Apr 12]. In: Adam MP, Ardinger HH, Pagon RA, et al., editors. GeneReviews® [Internet]. Seattle (WA): University of Washington, Seattle; 1993-2020. Available from: https://www.ncbi.nlm.nih.gov/books/NBK1211/
How often is Lynch syndrome not inherited?

It is possible for a genetic change to occur randomly during fetal development. This is a called a de novo change, because the mutation was not inherited from a parent. If a random genetic change occurs in one of the Lynch syndrome-associated genes, this can cause Lynch syndrome. However, de novo mutations do not often occur in one gene associated with Lynch syndrome. It is much more common for a mutation in one of the Lynch syndrome genes to be inherited from a parent.

References
  • Kohlmann W, Gruber SB. Lynch Syndrome. 2004 Feb 5 [Updated 2018 Apr 12]. In: Adam MP, Ardinger HH, Pagon RA, et al., editors. GeneReviews® [Internet]. Seattle (WA): University of Washington, Seattle; 1993-2020. Available from: https://www.ncbi.nlm.nih.gov/books/NBK1211/
What is the difference between a somatic mutation and a germline mutation?

A somatic mutation is a mutation that is found in the tumor cells. Mutations are found in most cancer cells because of their abnormal properties. Testing your blood can find mutations that are GERMLINE, that you may be born with. If there are certain somatic mutations present, they may indicate the presence of the same germline mutations. This is why paired somatic/germline testing may benefit you.

References
  • Kohlmann W, Gruber SB. Lynch Syndrome. 2004 Feb 5 [Updated 2018 Apr 12]. In: Adam MP, Ardinger HH, Pagon RA, et al., editors. GeneReviews® [Internet]. Seattle (WA): University of Washington, Seattle; 1993-2020. Available from: https://www.ncbi.nlm.nih.gov/books/NBK1211/
Can my child get tested for Lynch Syndrome?

Although molecular genetic testing for Lynch syndrome is generally not recommended for at-risk individuals younger than age 18 years, a history of early cancers in the family may warrant predictive testing prior to age 18.

References
  • Kohlmann W, Gruber SB. Lynch Syndrome. 2004 Feb 5 [Updated 2018 Apr 12]. In: Adam MP, Ardinger HH, Pagon RA, et al., editors. GeneReviews® [Internet]. Seattle (WA): University of Washington, Seattle; 1993-2020. Available from: https://www.ncbi.nlm.nih.gov/books/NBK1211/
How can I make sure that I am getting all possible Lynch Syndrome screening?

The NCCN (National Comprehensive Cancer Network) posts a series of guidelines that can be accessed by anybody. Your doctor or genetic counselor can provide you with a list of these recommendations, or you can access them directly via the NCCN website.

References
  • Retrieved on September 15, 2019: NCCN (https://www.nccn.org)
My job wants to know about my genetic test results. Should I tell them?

GINA (the Genetic Information Non-Discrimination Act) is a law that protects you from discrimination within health insurance and your workplace. There are certain exceptions for this law, but in large businesses (>15 employees), your employer is not legally allowed to ask you for your genetic test results. You can read more about GINA here.

References
  • Retrieved on September 15, 2019: GINA Help (http://www.ginahelp.org/GINAhelp.pdf)
I have Lynch Syndrome. When should I get a colonoscopy?

Current NCCN Guidelines for those affected by Lynch Syndrome state that you should get a colonoscopy with removal of precancerous polyps every one to two years beginning between age 20 and 25 years or two to five years before the earliest age of diagnosis in the family, whichever is earlier.

References
  • Kohlmann W, Gruber SB. Lynch Syndrome. 2004 Feb 5 [Updated 2018 Apr 12]. In: Adam MP, Ardinger HH, Pagon RA, et al., editors. GeneReviews® [Internet]. Seattle (WA): University of Washington, Seattle; 1993-2020. Available from: https://www.ncbi.nlm.nih.gov/books/NBK1211/
I have Lynch Syndrome. Will I definitely get cancer?

Cancer is not guaranteed if you have Lynch Syndrome. Although the risks are very high for some cancers, some people do live their whole lives with Lynch Syndrome but do not actually ever develop cancer. if you need more help understanding your cancer risk, you can speak with a genetic counselor. One can be found using this link.

References
  • Retrieved on September 15, 2019: Find A Genetic Counselor (https://www.findageneticcounselor.com)
Is DNA banking available to people with Lynch syndrome?

DNA banking is available for people with Lynch syndrome as it is likely that testing methodology and our understanding of genes, allelic variants, and diseases will improve in the future, consideration should be given to banking DNA of affected individuals.

References
  • Kohlmann W, Gruber SB. Lynch Syndrome. 2004 Feb 5 [Updated 2018 Apr 12]. In: Adam MP, Ardinger HH, Pagon RA, et al., editors. GeneReviews® [Internet]. Seattle (WA): University of Washington, Seattle; 1993-2020. Available from: https://www.ncbi.nlm.nih.gov/books/NBK1211/

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