I began dating someone around the time I had genetic testing for HNPCC. We are now seeing each other exclusively. When and how should I tell that I have a gene alteration? Should I even tell?
Thinking About Marriage

Dear Friend,

Your question is certainly important and one that many people in your position are wondering about. When someone enters a relationship, it's human nature to think about what personal details about yourself you should share with your partner and what details you should let them uncover over time. In our experience with people with hereditary colon cancer syndromes, like hereditary non-polyposis colon cancer (HNPCC), it is best if they are open and honest with their partners. Explaining the details to them in the correct way is most important because new information can be hard to understand or confusing. You may want to ask a genetic counselor or someone in your family who also understands HNPCC to help you explain it to your partner.

As you know, people with HNPCC are at increased risk for colon cancer and other cancers. Luckily, the risks for these cancers can be significantly decreased by going through regular screening, like colonoscopy for colon cancer screening. As you can imagine, telling your partner you are at increased risk for certain cancers might be scary for them because they care about you, so be sure to also tell them that you can dramatically lessen the chances of developing cancer by having regular screening.

A conversation might begin like this: "There is something important I want to share with you. I have to go to the doctor for cancer screening more often than most people because of a gene I inherited. As long as I go to the doctor for screening, I probably won't get cancer. There may be times later on when I have to make difficult decisions about my risk for cancer, but I am prepared and I have support from many people (family, friends, genetic counselors, other counselors, and doctors). I am telling you this because I care about you."

After you explain how HNPCC happens, your partner may wonder about the risks for your future children. As you know, people who have HNPCC have a 50% chance of passing the gene on to each of their children. Each child who inherits the HNPCC gene would also need to begin thinking about cancer screening and surveillance when they got older, much the same way you are now. By then, we may be even better at preventing the cancers associated with HNPCC.

Many people would agree that, one of the most important characteristics of a relationship is honesty. By being honest with your partner now, you lay the framework for an open, honest, and trusting relationship. Again, the process of explaining HNPCC to your partner may be easier with the help of a genetic counselor, perhaps the same genetic counselor who first explained it you.

Brian Allen, M.S. and Peggy Conrad, M.S.
University of California-San Francisco Hereditary Colon Cancer Program

Next Question: I have heard that FAP gets worse with every generation. I had my colon removed when I was 16. Will my children need surgery at an earlier age? Will they have other problems that I have not had?
Thinking about the future