Talking with your children about your cancer

For most cancer patients who are parents, there is nothing more difficult than worrying about our children. At diagnosis, the first thought may be "Am I going to die?," but it is followed closely by "What will happen to my children?" Whatever our family circumstances, those fears are real and must be understood and addressed. The facts of a particular cancer greatly influence the realities, but there are some recommendations that are applicable to everyone.

Years ago, I participated in a longitudinal study of families where a mother had breast cancer. The findings were simple: children who were given age-appropriate information and whose own routines were not too disrupted, did fine. This is reassuring for patients who can expect to get through treatment and be well for a period, hopefully a very long period, of time. For those who must contend with a life-threatening diagnosis, this is more challenging.

Remember that you know your children and your family best. Your own instincts are likely to be good, but they will be colored by your own intense feelings, and it is often helpful to talk with someone about your plans. In most cases, you don't need to share information about your diagnosis on the day it happens. You do need to recognize that the atmosphere in your home will immediately change, and that you will need to speak to your at-home children quickly. Remember the adage that "children are wonderful observers but terrible interpreters" of what they see and overhear. Their fantasies may be much worse than the reality. If your children no longer live at home, you have a little longer to gather your thoughts, and you may choose to wait until you can present them with the facts and your plan. However, don't delay long enough to risk the possibility of someone else sharing the news with them.

Through the years, I have known a few parents who opted not to tell their children of their diagnosis. In one case, the father had a very slow-growing lymphoma, and he hoped that it would be years before he needed treatment and had to share the news. In fact, that is what happened, and children were young adults before they learned of his longtime cancer. He told me then that they did express some anger about the secret, but were mostly grateful that the parental worry had not been part of their childhood. In another case, a mother of young children did not say anything to them about her breast cancer and chemotherapy. Although she wore a wig and, unfortunately, had a lot of side effects from her treatment, she was convinced that they didn't know anything was wrong, and that she was protecting them with her silence. I thought then, and I think now, she made a mistake, and that there is no possible way that her children were unaware of a crisis in their home. In fact, we know that children often imagine something worse than the reality, so I have often wondered about what later happened in that family.

Here are some guidelines:

• Never lie to your children. The information should be age-appropriate, but it must be honest.
• Use the real words. They will hear others speaking about "cancer" or "chemo," and it will be more frightening if you haven't introduced that vocabulary.
• You don't need to overwhelm them with information in a single conversation. Think of it like sex education: you bring up the subject, tell them what they need to know immediately, and stay prepared to return to the topic often.
• Inform the school what is happening. You need their eyes on your child, and you hope that they will stand ready to be supportive.
• If your children seem to be struggling, consider connecting them with a counselor at school or in the community.
• Tell your children what is okay to share outside the family and what is private. Don't be surprised if they say more than you wish that they had.
• Alert them to big changes and events before they happen. This includes hair loss, planned hospitalizations and surgeries.
• Consider taking your children to visit your treatment center and to meet your caregivers. This is almost always normalizing and reassuring.
• If your young children ask if you are going to die, unless such a possibility is truly imminent, say "no." No one drops dead of cancer, and there will be time to prepare them if that time comes.
• A very helpful comment is this: "This is not the time for worry. If that time ever comes, I promise that I will tell you."