For breast cancer patients, one of the primary motivators for getting tested for hereditary cancer genes is to better understand the risks that their children might face in the future. And if women who are themselves parents test negative, they are of course happy to tell their kids--no surprise there.
To Tell or Not to Tell
Many parents, however, once they learn they've tested positive for a cancer gene, struggle with whether to actually tell their children. A study conducted at Fox Chase Cancer Center and published in the January 9 online version of the journal Cancer, provides us with some insight into this touchy issue. This research regarding how parents handled this sensitive information was an eye opener to me.
What One Group of Parents Did
The scientists first surveyed 505 parents who had gotten genetic tests for a breast-cancer gene. Among the 505, 29 percent tested positive for a BRCA gene. Most (66 percent) of these parents who tested positive shared the results with at least 1 child in their family.
The children who learned that their moms--who were all breast-cancer survivors--had tested positive for a breast-cancer gene were for the most part older. There were, however, some parents who even told their younger kids who were ages 10 to 13 years. That's pretty young to have to deal with such information, don’t you think?
My Own Experience
I remember that when the BRCA genetic test became available, in the mid-1990s, I was enthused and wanted to get tested. But when I told my daughter, who was 15 at the time, that I was planning to get genetically tested, she said, “Mom, please wait. Let me be a kid for a while longer.” That was a sobering statement for me to hear.
So I told her that before I embarked on testing I would wait until she was ready to hear the results. When she turned 21, she told me that she now wanted to know. I tested negative, which was good news; however, it did not mean that my daughter is guaranteed not to get breast cancer.
If you carried a gene, would you tell your children? And if so, when?
My message here is threefold:
First, we need to really think about what impact our test results will have on those of our children who are in fact still children. These genetic-testing results are heavy-duty information for young people to deal with.
Second, we must always remember that testing negative doesn’t mean cancer isn’t going to happen.
And third, before getting yourself tested, you are first duty-bound to go through genetic counseling so that you'll know exactly what your true risk is of carrying a gene.
Remember, testing negative for a breast cancer gene only means that you don’t carry the BRCA1 or BRCA2 gene. And yet there are other genes out there that we so far don’t have a way to test for. A counselor trained in this specialty can help you understand your risk and what steps you still might want to take to reduce your risk further. On the other hand, if you had been assuming you were high risk, you might also learn that your risk for cancer being genetically caused isn’t anywhere near as high as you thought.