Joining FORCES is the FORCE newsletter with news, views and supportive information for individuals concerned about hereditary breast and ovarian cancer.
by Sue Friedman
Presenter: Karen Hurley, PhD, Clinical Psychologist, Clinical Genetics Service, Memorial Sloan-Kettering Cancer Center
Dr. Hurley, whose work focuses on high-risk families, spoke of sharing cancer and risk information with children, including the following.
Why should we tell our children about cancer and cancer risk? Although it’s natural for parents to want to protect their children from difficult topics, children are already exposed to the disruption that cancer causes in families: the agonizing decision making, family members undergoing treatment and surgery, or loss of a family member to cancer. Absent an explanation they understand, children form their own beliefs, which may be based on incorrect information and can be difficult to resolve later.
There are two levels to the question, “How do I tell my children?” The first is: What words do I say? When should I tell them? The deeper, emotional layer is: How do I go through with this? How do I share this information when I’m still processing it myself?
Genetic status is a lifelong issue, although the details and focus change during our lifetimes. We do not have be totally resolved about our genetic status, but we should be clear about how we feel before discussing the topic with our children. The goal is to communicate BRCA and hereditary cancer risk to children in a way that leads to their growth and resolution and averts problems later.
The discussion is complicated by our desire to protect our children, our guilt, and our beliefs about order and fairness. Inheritance of a mutation is random, with a 50/50 chance of passing our status to each child. Even acknowledging this, randomness goes against our sense of order and fairness. Guilt is a normal response to uncontrollable events, especially with regard to passing on a gene mutation.
Preparing to discuss difficult topics with children:
We cannot control genetics. The legacy we can control is the life lessons we teach our children. We can use this discussion to teach our children how to tackle challenges: cope with uncertainty, adversity, and uncontrollable events, and handle the agonizing predicament of making decisions when there are no good choices but a choice must be made.
Dr. Hurley also provided tips from the Parents at Challenging Time (PACT) Program at Massachusetts General, which focuses on parents who are dealing with cancer diagnosis: