Your genes determine a lot about you — from hair color to risk for developing some cancers. Could you benefit from genetic counseling?

Published: March 21, 2016 | Updated: January 31, 2023

At age 31, my husband, Lonnie, was diagnosed with cancer — a form of non-Hodgkin lymphoma. As if that wasn’t scary enough, the weeks of testing he underwent during the diagnosis process uncovered something suspicious in his colon. Lonnie underwent a colonoscopy, during which his doctor discovered a polyp so large that only part of it could be removed. It was biopsied and determined that Lonnie needed a section of his colon removed to ensure that the polyp, made up of pre-cancerous cells, was completely removed.

I’ll never forget the doctor saying that it wouldn’t have taken more than 5 to 10 years to become cancerous, and by the time Lonnie had any symptoms it would have been too late. Wow. That means he would have developed late-stage colon cancer before he would have even had his first colonoscopy at age 45, the recommendation for African-American men.

After Lonnie had healed from surgery and completed radiation treatments for the lymphoma, his doctor recommended genetic counseling and testing for Lynch syndrome, an inherited disorder that causes many types of cancers, particularly colon cancer. With Lonnie being so young, we decided to pursue genetic counseling and testing to see if there was something in his genes that led to his health crisis. And with having two kids — and another on the way — this information would be invaluable in deciding whether our children need genetic testing in the future or certain cancer screenings prior to the usual age recommendations in order to proactively manage their cancer risk.

What is genetic counseling?

Genetic counseling is done by a health care professional with specialized graduate training in the areas of medical genetics and counseling. Genetic counselors provide information and support to people with birth defects or genetic disorders and to families who may be at risk for a variety of inherited conditions. Depending on the reason you are referred for genetic counseling, you may work with a genetic counselor with a specific area of expertise.

During Lonnie’s appointment, we filled out an extensive questionnaire on his family medical history, they took a blood sample and we waited for the results. A few weeks later we found out that Lonnie most likely does not have Lynch syndrome. The genetic counselor recommended staying in touch every six months or so, because as more people who have genes like Lonnie’s are tested, the more we’ll know.

Who is a candidate for genetic counseling and testing?

• People with a family history of certain health conditions 
• Couples planning a pregnancy who may be carriers of certain health conditions 
• People with a known genetic mutation in their family 
• People with certain medical conditions who want to learn whether they could pass it to their children 
• People who want to share their genetic information with relatives or doctors

Though a genetic test will not tell you with certainty whether you will develop cancer, it can help you understand your risk so that you and your doctor can make a proactive plan to manage it. In addition, the genetic counselor will help you find ways to share your test results with family members who may benefit from knowing this information in order to reduce their cancer risk.

Benefits of genetic testing

• Finding out why cancer is occurring can help resolve uncertainty for you and your family. 
• Knowing whether your diagnosed cancer is hereditary can help you and your doctors decide which treatment options are the most appropriate. 
• Knowing whether the cancer in your family is hereditary can help you and your doctors take steps to prevent the development of certain cancers in the future. 
• Knowing whether you are at increased risk for cancer enables you to have more frequent cancer screenings so that if cancer is ever detected, it can be treated early. 
• Genetic testing provides support for insurance coverage of more frequent screenings and preventive measures. 
• Genetic testing identifies family members who are not at an increased risk for developing cancer.

Genetic testing is not for everyone, and each individual must consider the risks and benefits when making a decision. While it is important that you discuss genetic testing with your family, the choice to test is personal. Different members of the family may make different decisions about testing. In any case, it is important to talk to a genetic counselor so that you can be empowered with the correct information to make an informed decision about testing.

How much does it cost?

The cost of testing is often, but not always, covered by insurance. Cost is determined by your insurance policy and medical history. You can choose to be informed of the amount you will pay before agreeing to have the test performed.

While some cancers have a genetic link, your risk of developing most cancers — especially colon cancer — can be reduced through healthy eating, regular exercise and early screenings. Learn more about your personal risk factors for colon cancer by taking this quick colon cancer risk assessment.