Discovering your family has a genetic link to colon cancer can bring with it many emotions. But learning this important information can give you a leg up on taking care of you and your family’s health. For some people it simply means being more vigilant about frequent colonoscopy screenings (often starting at younger ages) for others it can involve more.
It’s important to remember: even in the most high-risk families, around half of family members will not inherit the risk.
Key genetic conditions linked with colon cancer:
Lynch syndrome [which used to be called Hereditary non-polyposis colorectal cancer (HNPCC)] means individuals are at a high risk of developing colon and other cancers, often before the age of 50.
Familial adenomatous polyposis (FAP) is a hereditary condition that leads to colon polyps developing in the teen years, and over time may have hundreds of polyps have a high chance of developing into cancer.
Those who have these genetic conditions can benefit from starting colonoscopy screening at very early ages (teens and 20s) to find polyps and cancers early.
If it is determined that you have a genetic risk, you will be able to review the medical guidelines for care of individuals with your condition and then you can make better medial decisions based on that information. Finding physicians (or a combination of providers) who will be your go-to for coordinating care and helping you stay up-to-date with the recommended surveillance and screenings is important.
A care team for most hereditary colon cancer conditions includes a gastrointestinal physician and a second doctor (often a primary care provider) to coordinate care for other aspects of the condition. If you have had cancer, an oncologist may also coordinate this care. Some genetic counselors are part of specialty clinics that also coordinate this ongoing care.
For most conditions, you are looking for someone who will meet with you regularly, usually at least once a year, to review your needs. You are looking for physicians who are either already knowledgeable about the condition, or are willing to learn and stay current on advances for the condition. Keep in mind that guidelines often change every few years. You may also choose to meet with other specialists to learn more and make the right decisions for you.
Your care team can also help determine of if there are any clinical or research trials that you could participate in, and provide resources that are available for this specific condition, such as support groups and focused organizations.
A diagnosis of a specific inherited risk may also give you other decisions to make, including surgical cancer prevention strategies or medication use decisions. The timing of surgical decisions is important and varies depending on the condition and other details. For example:
- Women with Lynch syndrome often meet with a gynecologist or gynecological oncologist to make decisions about gynecological surgeries (including complete hysterectomy) and hormone replacement; decisions that can often wait until after childbearing.
- Individuals with polyposis may need to consider surgical removal of a portion, or all, of their colon, when too many polyps are present.
Only you and your care team will be able to make the best choices for you and your family.
Overview Video #1: Family History Video #2: Talk to a professional Video #3: Get the right test. Video #5: Change Your Story
This information is presented through a partnership of the Colon Cancer Coalition and the Minnesota Genetic Counselors Association (MNGCA).
Information on these pages is provided for educational purposes only. Consult your own physician before making any medical decisions.