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Information central for parenting with breast cancer.

When Things Don’t Go as Planned

When Your Prognosis Is Poor

Hope, Honesty, Support

Mothers with a poor prognosis, from either an initial diagnosis of breast cancer or a recurrence, face unique challenges with their children. Three guiding principles for parenting during these difficult circumstances are hope, honesty, and support.

Hope

Instill hope in your children. Tell them about the steps you and your doctors are taking to treat your advanced disease. Why is hope important?

  • Hope helps us cope. Hope is a powerful tool that we all depend on for coping with life’s challenges. Hope that a baby’s birth is imminent helps a mother cope with contractions during labor. Hope that a win is likely allows a boy to run for class president despite the potential for an embarrassing loss. By giving your child hope about your illness, you offer him a powerful tool for coping with your disease.
  • Nothing is certain. You don’t know if you will live for six weeks, six months, or six years. Our doctors cannot see the future, and they don’t know for certain how things will unfold. This is particularly important for children to understand. Younger kids don’t have an accurate sense of time. In their frame of reference, six months might as well be six years.
  • Incurable is not the same as untreatable. You can’t cure advanced breast cancer. You can’t turn back the clock and take the disease out of your body. But you can treat it. Surgery, radiation, hormonal therapy, chemotherapy, complementary therapies, and pain management offer more potential than ever for enjoying a fulfilling life with advanced breast cancer. Help your kids understand this distinction. Also, let your kids know that many people with advanced breast cancer lead a normal life. For them, breast cancer is like diabetes: They receive ongoing treatment but continue to live a long and happy life.
  • The meaning of hope evolves. When a mother is first diagnosed with breast cancer, she hopes for a return to a normal life with a normal life expectancy. When her cancer advances, a mom’s hopes change. She begins to hope for a positive outcome for her family, an opportunity to share her thoughts and feelings with her children, a feeling of peace for herself, and an ability to control her symptoms.

Honesty

You can be hopeful and honest at the same time. Give your children information as they need it. Tell your kids that you are very sick. Yet unless death is imminent, don’t tell them that you are going to die. If they ask, acknowledge the possibility. But don’t burden them with information before they need it.

Support

Acknowledge and validate your child’s response to the news of your advanced disease. If your child bursts into tears, don’t tell him not to worry. Instead, say, “I know how painful this is for you, but we will get through it.”

Line up support for your kids-family members, professional counselors, clergy members, teachers, support groups, social service agencies. Let your child know that all of these people are there to support him. Let him know that he will not face this alone.

When to Tell the Kids

  • Tell your children about your advanced disease when you have a plan for treatment and a plan for sharing the news.
  • Think about what you are going to say and how you would like to say it. Consider making some notes. Even if you don’t use them, writing it down will help set the ideas and words in your mind.
  • Pick a time when you can be with your children for an extended period. You might choose a Friday evening so you can have the weekend together.
  • Don’t share the news when you will be unavailable to them (when they’re leaving for camp).
  • Don’t tell them before or during an important event (the day before school starts or the middle of exams).

How to Tell the Kids

  • Have your partner with you. Consider having other loved ones with you as well, like a grandparent or an aunt who is particularly close to your kids.
  • Tell your children about the support you have lined up for them.
  • Plan to comfort your kids. They probably have rituals for soothing themselves, like cuddling a well-loved stuffed animal, watching a favorite video, or listening to music. You probably have ways to help soothe your kids as well. Perhaps you read to them in bed or go for walks together. Think about these rituals ahead of time so you’re prepared to help comfort them.

Helping Your Child Cope

  • Listen. Pay attention to your child, and hear what he is telling you. Look him in the eye when he talks to you.
  • Be available. You don’t know when or where your child will want to talk, so do your best to be available.
  • Follow your child’s lead. Don’t make assumptions, and don’t try to “fix” things for your child. Sometimes they just want you to listen to what they’re thinking and feeling.
  • Offer information. Books and websites can help your kids cope. Offer them to your children. Leave the information out for older children to take if and when they want it.
  • Keep it simple. See if he seems to understand what you’re saying and if he needs more, or less, information.
  • Have physical contact. Offer cuddles, hugs, handholding, or an arm around a shoulder. But do it on your child’s terms. While physical contact can feel supportive, it can also feel smothering or irritating. Pay attention to your child’s body language so you can tell whether or not he finds this contact reassuring.
  • Give your child a break. Your child may have difficulty concentrating, and his grades may suffer.
  • Don’t abandon all rules. While your child may need a break, he still needs structure. Maintain expectations for basic functioning, such as personal hygiene, attendance at school, and common courtesy.
  • Communicate with other adults. Talk to teachers, coaches, and parents of close friends. Tell them what’s happening, and ask them to keep you informed of changes or important incidents involving your children.
  • Allow time to be alone. Your child may need time alone to process his feelings. Just be sure he doesn’t become isolated from family and friends.
  • Allow your child to feel his feelings. Don’t dismiss your child’s feelings of anger, frustration, disappointment, and fear. Your instincts might tell you to protect your child from these difficult feelings. But he needs to work through them, not around them.
  • Encourage expression of feelings. Your child can find relief by writing, drawing, and talking about his feelings.
  • Encourage peer support. Your child may find support with his friends or through formal peer support groups.

If Death is Imminent

  • Communicate openly. Tell your child what is happening and, to the best of your ability, what he can expect. Encourage your child to talk about his feelings, and be sure to tell him how you feel.
  • Use accurate, age-appropriate words. Avoid euphemisms like “passed away” or “going to sleep.” These terms can be disturbing for young children. Think about how your child will interpret the things you say. For example, by telling your child that death means “going to sleep,” you are telling your child that he may not wake up when he falls asleep.
  • Understand your child’s fears. Your child may be afraid of being alone or becoming invisible. He may fear dying himself. He may worry about what will happen to your body, and he may wonder whether you will still love him once you’re gone. He may fear that he’ll be excluded from discussions and decision-making. He may also worry that he’ll upset others when they’re already feeling bad.
  • Give him permission to grieve. Let your child know that feeling sad and angry is normal and acceptable.
  • Death is normal. While your death may be premature, it’s not unusual to die. Everyone and everything that is alive will die.
  • Answer questions. Do your best to answer your child’s questions. It’s okay to say, “I don’t know” or “What do you think?” You can also say, “I don’t know the answer to that question, but I’ll find out for you.” Just be sure to follow up and get back to your child.
  • Help your child find closure. You can help your child accept your death by helping him say goodbye. You can create a memory book together or write each other goodbye letters. You can plan an end-of-life celebration together, perhaps a last visit to a special place or a gathering of friends and family. You can also talk about what rituals will help him accept your death once it has occurred. He may want to attend your funeral, or he may want to visit your grave after the funeral is over. He may want to launch a helium-filled balloon with a note to you or plant a tree in your memory.

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