Talking with children throughout treatment

If you are a parent with breast cancer, conversations with your children will evolve and change as you go through treatment. It’s normal to feel uncertain about treatment discussions while making sure they can still “be kids.”

After sharing the news about your diagnosis, it’s important to keep the lines of communication open. You don’t have to talk about breast cancer every day, but children should be aware of changes that will affect them:

• A hospital stay
• Recovery time at home
• Treatment side effects they may notice
• Your availability to do the things you normally do
• Appointments for treatments, tests, and scans
• Doctor visits

Below, you can read tips for keeping children informed about what’s going on.

Tips for talking with children of any age

The following guidance can be helpful in talking with children of any age throughout your treatment:

• Always tell the truth. You don’t have to share every detail of your treatment. Just make sure that everything you say is true, even if this means saying, “I don’t know.”
• You can always emphasize what is going well — that you trust your doctors and that they have medicines that will help you.
• Use your doctor’s name when you talk about them to your child.
• Use real words, such as “cancer” and “chemotherapy,” to help younger children understand that what you have is very different from illnesses they might experience, such as colds or viruses. Offer simple explanations of difficult terms. For example:
  • “Cancer happens when cells, the tiny building blocks of the body, grow and divide out of control.”
  • “Chemotherapy is strong medicine that can destroy cancer cells anywhere in the body, which is what we want! It can harm healthy cells too, which is why I might be super-tired or lose some hair.”
• Continue to reassure young people that what’s happening has nothing to do with anything they did or thought. Let them know that you love them.
• Carve out time for a weekly routine check-in, perhaps during or after a meal. Invite your kids to share any questions, and keep them updated on your treatment schedule and how it might affect the family calendar.

Tips for talking with older children and teens

Older children and teens have a better understanding of what’s happening during your treatment. The following tips may be helpful:

• Ask them what they want to know. Some children may want to know all the details; others may not.
• Tell them you will let them know if there are changes in your health situation.
• If you have an update to share, ask them if it’s a good time to talk. If they say they’re worried about homework or an upcoming game, delay the conversation until another time.
• Invite them to ask questions, and check in with them for regular follow-up conversations.
• If writing down questions is more comfortable for them, you can use a shared journal, emails, or texts, depending on how you usually communicate.
• Tell them it won’t upset you to talk about your diagnosis. This can help reduce unintentional pressure on children to protect you by not talking about it. Talking openly can help children feel supported.
• Let them know there are other trusted adults they can also talk to about your diagnosis and how they’re feeling. Examples could include a family friend, relative, teacher, school counselor, or a minister or other spiritual leader.
• Do a shared activity while talking about cancer. Building Legos, drawing, playing a game, baking, going on a walk, or even driving in the car can be a good time to share updates. It gives kids an opportunity to process the information without the stress of having to hold direct eye contact or worry about managing their feelings.
• Ask specific questions when checking in with them. Instead of asking, “How are you doing with all this?” start with something specific. Try something like, “How did you feel when I couldn’t come to your game last week?” or “Are you OK with the extra chores you’re handling at home?”
• It’s fine to talk to teens on a more adult level, but remember that teens don’t have the same emotional capacity as adults. They might overreact or not appear to react at all when you give them updates. They also may prefer to open up to their friends instead of you, to avoid worrying you by appearing upset. Make sure they know it’s still important for them to maintain their normal lives and friendships.
• If your child uses the internet, suggest looking at trusted websites or YouTube videos together if they want to understand more about breast cancer and your diagnosis. If they research on their own, they could run into concerning information or survival statistics that don’t really fit your situation. Encourage them to share anything they find on the internet or social media with you, especially if it worries them.

Staying aware of behavior changes

Depending on their age and other factors, children can have different feelings about a parent going through breast cancer treatment.

Be aware of obvious, persistent changes in your child’s behavior. For instance, if a young child who is fully toilet-trained starts having accidents, or an older child’s grades begin to slip, this may need attention.

Children with anxiety might have headaches, stomachaches, nausea, or trouble sleeping, without being able to name their anxiety.

If these unusual changes last more than a couple of weeks, talk to your child’s doctor, as they might need professional help. Learn more about supporting your children’s mental and emotional health.

Talking about treatment schedules and side effects

As your treatment plan unfolds, try to keep children informed about your schedule and potential side effects. When you’re in active treatment, you might schedule a regular check-in to keep kids up to date and welcome them to ask questions.

Some tips:

• Prepare children to see you having side effects such as pain, limited mobility, hair loss, fatigue, or nausea. Knowing what to expect may help reduce their worries. Tell them they can ask questions about any changes they notice.
• Help kids understand why side effects are happening, and explain that they’re temporary. For example, tell them that chemotherapy can cause hair loss and fatigue, or that you could have pain after surgery for a while. Otherwise, they might think the cancer is getting worse. Let them know that hair grows back after chemotherapy, scars fade, and energy levels eventually return.
• Let your children know how certain treatments could affect your availability and daily routines. Tell them when you won’t be available, whether it’s because you’re at the doctor’s office or you’re not feeling well. Share the plan for who will help them with homework, drive to activities, and make dinner. Use a print or digital family calendar if it’s helpful.
• Make and share a contact list of people who are on call to help. You can post it in your kitchen in an easy-to-spot place, like the refrigerator. With older children, you might want to share it over email or text. Talk as a family about who they can turn to if you’re not available.
• Talk about the potential for unexpected changes. Even with the best-laid plans, there might be times when you’re suddenly not available: an appointment runs long, you’re not feeling well, or you’re experiencing a side effect you didn’t expect. Always have a “plan B” for those situations, and let your children know what it is.
• Give kids and teens options for how they can help. Depending on their ages, children can help with jobs around the house: unloading the dishwasher, putting laundry away, pet care, setting the table, or simple meal prep. Let children know when you’re likely to need help. But check in with them to make sure they aren’t overwhelmed and still have time for their regular activities.
• Read books intended to help families communicate about cancer. It might be helpful to share age-appropriate books about having a parent with cancer.
  • LBBC’s Reading for Reassurance program offers free books tailored for children aged 4-17 with a parent who has been diagnosed with breast cancer within the last 6 months.
  • Your hospital or cancer center may have a family center or library with resources designed for kids.
  • Community librarians can be a great resource as well.

Talking about metastatic breast cancer treatment

Just as treatment is ongoing, conversations with children will be ongoing, and they’ll evolve as circumstances change. As your kids grow older, they’ll likely be able to understand the situation more clearly.

Knowing that communication is a continuous process can lower some of the pressure of getting it “right” the first time you talk about your diagnosis. Give children important information at a pace that feels comfortable for them.

Ongoing conversations can help to make things feel less uncertain. Children should feel comfortable knowing that the lines of communication are always open.

It’s important to communicate that even if a treatment stops working, there is often another treatment option that can control the cancer. Reassure them that no matter what happens, there is always a plan with next steps, and there will always be someone to care for them.

To learn more, visit Talking with family about metastatic breast cancer.

Communicating about follow-up tests

School-age children and teens are likely to know when you have a doctor’s appointment or follow-up tests, such as bloodwork and imaging scans. Even if they aren’t fully aware of your appointment schedule, you’ll likely receive some results you want to share with them, whether they’re positive or negative.

The following tips may be helpful:

• Explain the purpose of any follow-up tests in language they can understand. For example, you might have blood tests or imaging scans to check if the cancer is responding to treatment. Keep it simple and straightforward.
• Let kids know you’ll share the results and what they mean. Choose a quiet time to sit down and tell them what you know. Explain how the results will shape the treatment plan.
• Tell them that your healthcare team will always have a plan for you, no matter what the results are. For older kids and teens, this can help calm anxiety about “bad news” test results, such as cancer coming back. Let them know that whether a test result is good or bad, your healthcare team will adjust the plan in a way that makes sense for you.