March is Colorectal Cancer Awareness Month- Do you Know About Lynch Syndrome?

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In honor of Colorectal Cancer Awareness Month, I would like to discuss the most common cause of hereditary colorectal and uterine cancer – Lynch syndrome. In fact, this post is dedicated to my brother Jimmy, who died of colon cancer due to Lynch syndrome at the age of 36.

Lynch syndrome is a hereditary cancer condition passed down in families through a gene mutation, in which each child has a 50% chance to inherit the mutation from a parent. Both men and women can have Lynch syndrome and can pass it on to their children. You can read more about Lynch syndrome here on the website.

There are about 1 million Lynch syndrome mutation carriers in the United States; however, only 5% of them knows they carry a mutation. Mutation carriers have a substantially increased risk of cancers of the colon, rectum, and endometrium, which generally occur at younger ages than in the general population. Lynch syndrome, depending upon which gene mutation you have, may also increase the risk of cancer of the stomach, ovaries, small bowel, and other areas.

Here are some signs that you or your family may have an increased risk for colorectal cancer due to an inherited cause:

  • Colorectal or uterine cancer diagnosed younger than age 50
  • 2 separate colorectal cancers or colorectal and uterine cancer in the same person
  • 3 or more family members with colorectal, uterine, ovarian, and/or stomach cancer*
  • Multiple close family members with colorectal and other cancers*
  • 10 or more colorectal polyps during one’s lifetime (adenomatous, hyperplastic and /or hamartomatous polyps)

*On the same side of the family

Please note that not everyone’s family meets the criteria for hereditary colorectal cancer mentioned above. Some people who are adopted may not know their family medical history, and many people of Jewish decent have significant gaps in their family medical history due to the Holocaust.

Unfortunately, according to a February 2016 study, only 30% of medical specialists (endoscopists) looking after participants at increased risk for Lynch syndrome (formerly called hereditary non-polyposis colorectal cancer) recommended colonoscopy screening every 1-2 years (as per medical guidelines). According to study co-author Dr. Jan T. Lowery, “We are talking about cancers that can be prevented with recommended stepped-up screenings. We are missing important opportunities.”

This is an enormous issue within the Lynch syndrome community and why I insist that people reach out a certified genetic counselor (CGC). A CGC can let you know which mutation you have and which screening measures you need. You can get some basics about Lynch syndrome gene mutations here on the website, but a CGC or other genetics specialist will be able to give you complete details.

A CGC should also be able to help you find doctors who are well-versed in Lynch syndrome mutations and screening protocols. Frequent, meticulous screenings are crucial for cancer prevention or at the very least, catching cancers early in those with Lynch syndrome when they are most treatable.

The knowledge gained through genetic testing is highly powerful for those with a hereditary cancer syndrome who fully understand their genetic test results and have access to the resources and proper screening measures that actually will help them maintain their health – this is why is it so important patients to seek out certified genetic counseling.

If you have any of the signs mentioned earlier for hereditary colorectal cancer, please talk to you doctor and ask for a referral to a CGC to learn more about your risk. Alternatively, you can go to The National Society of Genetic Counselors’ website or the Canadian Association of Genetic Counsellors’ website to find a certified genetic counselor or genetics clinic near you.  

Lastly, Lynch Syndrome Awareness Day is March 22nd.  Please help our community spread awareness by sharing this post on social media. You just might save a life.

 



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