Discussing cancer with your kids

This is a topic that I have discussed before, but it is so important to parents that it seems right to return to it time and again. Anyone with cancer who has children worries most about them. When we are first diagnosed, our first thoughts are likely to be: What will happen to my children? And, closely related, Am I going to die?

There is nothing very reassuring to say about these fears as they are completely authentic and legitimate. Years ago, I worked with a colleague from Psychiatry to examine how children coped during a parent's cancer experience. What we learned was not so surprising: Children whose schedules are not dramatically changed and who are given honest, age-appropriate information generally do well. Clearly you tell your five-year-old child something different than you tell your teenager. Many studies have found that cancer patients who are parents of young children worry more than any others. If, as a parent, you are concerned about getting through a prescribed number of months of treatment, that is hard enough. If, however, you are facing a life-ending diagnosis, it is much worse. In either situation, the keys remain open communication, love, and the promise that your children will be cared for and beloved.

You know your children best. It can be overwhelming to manage your own intense feelings and figure out how best to talk with them. Consider discussing your strategy and even practicing the conversation with your spouse, a close friend or family member, a member of the clergy or a counselor before you begin. One caveat about this suggestion is that you can't wait too long. There is a cliché that children are wonderful observers, but terrible interpreters. This means that they will be acutely aware of the distress in the air and the tensions in their parents, but they won't understand what is happening. Their imagined reasons may well be worse than the reality. If your children are away at school or no longer live at home, you may be able to wait a little longer to share the news. In that case, you need to be very sure that there is no chance that they will hear about it from someone else; you need to be the one to tell them.

Secrecy and silence will only fan your children's fears. I remember one woman who was determined to never tell her young children about her breast cancer. She never removed her wig in their presence, never told them about her appointments, locked the bathroom door, and was convinced she had fooled them. I sincerely doubt that she had and continue to worry about the impact of her choices on them.

Over the years, I have worked with many women who lost a mother to cancer when they were young. Of course they all suffered, but almost all went on to develop healthy and happy lives. The exceptions were those who were never told the truth. No doubt their parents, and this was in a different era, thought they were protecting them with their silence, but it was devastating to watch a mother become more ill and then suddenly disappear without a chance to be part of this critically important family experience.

There are some excellent resources available:

• Telling Kids About Cancer has advice for sharing information with children of all ages.
• CancerCare for Kids features podcasts, educational workshops, and other supports for parents, children, and adolescents.
• If you are going to read one book, this is the one: Raising an Emotionally Healthy Child when a Parent is Sick by Paula K. Rauch and Anna C. Muriel. It is widely available.
• At BIDMC, oncology social workers are available to talk about all this with you.

Here are some tips as you consider these important conversations. Note the plural; this is never a one-time discussion.

• Always be honest. Resist the temptation to lie about sensitive matters.
• Avoid euphemisms. Your children will overhear words like cancer or chemotherapy. Be sure they know what these words mean, and avoid the childish and confusing words like booboo.
• Give them information gradually and as they need it. Think of it as being like sex education. Bring up the subject, tell them what they need to know right now, and be prepared to revisit the topic often.
• Don't be surprised if your children seem uninterested or unfazed by your news. This does not mean they didn't listen and don't care.
• Enlist additional helpers: a counselor at school, a favorite teacher or couch, good friends or parents of their good friends. Make sure that your child's school knows what is going on at home. If they don't know, they can't help.
• Prepare your children for big changes and events such as hair loss, planned hospitalizations and surgeries.
• Consider taking your children to visit your treatment center and meet your caregivers. This is almost always reassuring to them. If you want to do this, pick a time when the center will be uncrowded and, ideally, arrange for one of your providers to meet them.
• Be prepared for the question: Are you going to die? Unless your death is imminent, it is OK to say "no." You will have an opportunity to prepare them if that time does come. Here is one possible response: This is not the time to worry. If that time ever comes, I promise that I will tell you. This promise, and following through on it, may be the single most important sentence you can utter.