Finding out that I had cancer and then having to tell my husband and children was one of the most difficult conversations I have ever had. I was overwhelmed with what it meant to me, let alone what it was going to feel like to them. I wanted to reassure them that everything would be fine, but I couldn’t guarantee that and I’m not the kind of person that promises things I can’t deliver. For my children especially, I wanted them to know that I would do all that I could to get through my surgery and treatment and stay healthy. It was a goal for me to see them get married and have their own families.
After I was first diagnosed, my oncologist took a thorough family history. Both of my parents were colon cancer survivors. My cancer was gynecological. I never made the connection that there may be a genetic component to our cancers. My doctor suggested I should have genetic testing done. I tested positive for the MLH1 variant of Lynch Syndrome. Lynch is due to inherited changes in genes that affect DNA mismatch repair, a process that fixes mistakes made when the DNA is copied. These genes normally protect a person from getting certain cancers, but mutations in the genes prevent them from working properly. A person with Lynch syndrome is more likely to get colorectal, endometrial, ovarian and other cancers. Lynch is passed through families and that meant that my children had a 50% chance of inheriting it.
SO…now I had to have the 2nd most difficult conversation in my life; this time with my son and daughter. I had to tell them that they might have it too. In many ways, I was torn about it. Information will ultimately save their lives, but it also puts them in a situation in which, at a young age, they have to begin surveillance testing to be certain they were cancer free. I was concerned that they would refuse to be tested. Both of my children were over 18 when I found out I had Lynch and I couldn’t force them to be tested. Both of my siblings had refused testing even though they knew that both my mother and I were positive for the gene. Fortunately, both of my kids wanted to pursue the testing. In the end, one of them was negative and the other positive.
Knowing that one of my children would experience the apprehension and at times, fears of a possible cancer diagnosis and that I was responsible for transmitting this gene to them was very tough for me. I know that it wasn’t done intentionally, but no parent wants to be the cause of their child’s serious health issues. I had to do a lot of work not to stay in a place of guilt. Since that time, my child and I have partnered in support of each other regarding Lynch. We have attended a conference and gone to doctor appointments together. In fact, although I would still opt to take it away from them if I could, it has brought us closer.