Talking To Children About MBC
Written for Infinite Strength by Dr. Nancy Borstelmann
Broaching the subject of MBC is a topic that is just fraught with emotion and no parent wants to enter into that conversation with their child. Choosing whether, when, and how to share news of a cancer diagnosis with children is one of a parent’s first, and most difficult, decisions. How do you counsel parents on talking to their children about their illness in an age appropriate manner?
In my professional career, I have learned so much from patients and families over the years about what they need and what they have found helpful. I also have had the privilege of hearing from adult patients who experienced cancer in the family when they were young, and now looking back at their younger selves, have shared what they wished for at that time. Research and caring for patients with children have also given us strong guidance on best practice and key needs of parents and children when navigating cancer as a family.
Let’s start with some general guidelines for parents at this challenging time.
Open communication has many benefits. Talking directly with your children is an important way to help them. As parents we naturally want to protect our kids, but in this situation, we know from research and clinical experience that children do better when they are included, hear directly from you what is happening, and then have an opportunity to ask questions and share their thoughts and feelings.
Children are often keen observers of their environment; they can sense stress and notice what is going on around them that feels different. Children can create their own stories about what they think is happening or about might be happening to you or going on at home. They may overhear adult conversations and not understand what is being said or feel upset at being left out. Remaining silent and having secrets tend to lead to misunderstandings and more distress for them and for you. Not talking with your children may also affect their trust of you and other adults.
You know your children best, and you are the expert on them. You may know who will need more support, who is a talker and who is not, how they have coped with stress, and what is going on in their lives that may add practical and/or emotional challenges. Of course, how you talk with your children will depend on where they are in their development, and you will need to consider what level of understanding they generally have based on their age.
Cancer is not one illness. Cancer may be completely unfamiliar to them or something they are aware of through family, friends, or the media. Cancer is many different illnesses and cancer care is complex and may vary from patient to patient. Patients diagnosed with the same cancer may have different experiences. This highlights the importance of your children understanding what your cancer is and what your course of care will be; they will want to know what this is going to be like for you.
Cancer is a very difficult secret to keep. When you are in treatment and dealing with all that cancer care involves, it is hard to keep this process under wraps. Cancer can be a major disruption in everyone’s life, so talking with your children openly gives them and you a chance to think about how to deal with the impact and problem-solve together. Cancer also brings up fears and a sense of uncertainty which are important to talk through. Being a part of the process lets them know how important they are and supports their trust in you.
Where do you start?
An important first step is to check in with yourself. Take time to check in with yourself--how you are feeling and reacting to this news. It can be helpful to think through what you hope to cover in your conversation and think about your child or each of your children, how they tend to react and cope with things in their world, a quality that we call temperament. Their temperament together with their age and other important things going on in their lives can affect how they respond in a conversation and what questions they might ask.
It can be helpful to talk over with a trusted person. Going over what you are feeling and worrying about can help you think more clearly as you consider talking with your children. It will also help you feel more in control when you give hard things some airtime with a supportive person. When you talk with your children, it is okay to show that you feel sad or unsure about things, and you might be tearful because that is real. Kids will see how you are and know that they can be sad or worried too, though at the same time, you don’t want to overwhelm or scare them with big feelings. This can make them feel like things are out of control and too scary to deal with, or that they shouldn’t ask you about your cancer care. It is so important that you are getting the support that you need; this will help you help them.
If you are sharing news, for example, about diagnosis, or about treatment, don’t think about it as “the conversation” but as the start of something. This is setting the stage for more shared conversations. It is okay to keep it short, keeping in mind that you don’t want to overwhelm your child with more than they need to know. Here is a general example: “You may have noticed that I have been making more trips to the doctor, and that I haven’t been feeling good. I want you to know that my doctor told me that I have an illness called cancer which is why I have been feeling sick. My doctor is helping me feel better; I will be going to the doctor every week to get special medicine. This medicine will help me, but also can make me feel tired. This is going to start next week. I want you to know we are doing everything we can to treat my kind of cancer, which is called breast cancer.”
Make space for their questions and feelings. Talk at your child’s pace and check out what they understand. Welcome all questions. Let them know that you will be giving them updates and sharing information as you have it. Find a time, not right before bed, when there is enough time, so no one feels rushed. Here is a general example:
“This is all new for me too, and it is a lot to take in. Sometimes I feel worried and sad about having cancer and having to deal with this, but I have great doctors and your dad and grandpa are helping too. I know it affects everyone in our family, so it is important to talk together. What questions do you have? How is this for you to hear? What else would you like to know?”
Consider the approach when you have children of different ages. It can be helpful to tell them together, covering some of the basics, and then give them time individually. This also emphasizes the shared reality, we are dealing with this together, and avoids the challenge of coordinating who gets told first, who might overhear, and so on.
Sometimes, however, with big differences in ages, or special challenges with one of your children, it may be more practical to talk with them separately first, and then come together, so it is clear that everyone has been included.
Across ages of children, here are a few helpful guidelines to keep in mind:
Be honest. Give simple general details about the diagnosis and what is happening to treat your cancer.
Consider the impact on normal routines. It is helpful to review what could be disrupted or other changes that may be needed, and then work through how to plan together, be prepared, and not surprised. Sometimes children share things that parents haven’t thought about or considered and good to have out in the open.
Reassure that nothing they did caused your cancer. Sometimes children will think that something they said or did (or didn’t do) caused the cancer or made the cancer worse; even older children, though not logical, can think like this. You might comment: “It can be really hard not to be able to control what is happening, or to not be able to make it better”. “I also want you to know that nothing you did or said could cause my cancer”. You might open up a conversation: “Have you ever thought or felt like that?”
It is helpful to give “news bulletins”—brief medical updates. This can be a time for kids to ask questions, and while many kids don’t really ask a lot of questions, they will feel included. Give permission for openness-- let them know that all questions can be asked. This is so helpful for children of all ages, as being left alone with your worries and questions, increases stress. Children can need encouragement to share what is on their minds, as they may feel uncertain about some of their own thoughts and feelings.
A parent’s possible approaches for children of different ages:
Infants/toddlers: They are too young to have awareness of illness, however, they can sense a parent’s emotional state, and may react to changes in their usual routines. These little ones need consistent caretaking and lots of physical contact for security (hugging, holding).
Younger and early school age children (3-6): They can have a basic understanding about illness, so need simple explanations, and may ask the same questions over and over. Children may think they can “catch” cancer, so it is important to state that it is not possible, that it is like having a broken leg, and not like a cold (something they will likely be familiar with). Reassure them that they did not cause the illness by their behavior or thoughts (“I was mad when you put me in time-out and I said you were mean”).
For younger children, it is helpful to share observable changes if there are any, as these will be more concrete and understandable to them. For example, noticing you have been more tired and don’t play with them as much, or changes in hair or skin, more trips to the doctor, a more frequent babysitter, etc. This is an opportunity to keep them included, without too many details. For example, “The medicine I am taking is helping, but it also makes me more tired. I am sorry and wish I could play outside, but I would love to do a puzzle or play cards”.
School-age children (6-12): Provide simple explanations of illness and treatment. There can be genuine curiosity and questions about cancer and treatment, and it can be helpful to welcome these as they may also bring to the surface misunderstandings or misperceptions about your cancer. For children this age, school is a major part of their life, as are the developing relationships with peers and teachers. Children at school may ask questions or say things that are not always kind; well-meaning adults can also ask about how you are doing. Help your child in advance by letting them know what is okay to share at school and to bring any questions or concerns back home to you.
Tweens/teens: It is hard to protect them from misinformation on social media or the Internet, unhelpful advice, or others’ comments. It can be helpful to say to them, “You may hear or read about breast cancer, or people or kids at school may say things that stress you or worry you. There is a lot of information on the Internet or in social media that is not accurate about cancer”. Encourage them to bring questions and worries to you. You can tell them that the best information and resources come from your cancer treatment team, and you can ask your team as needed.
For tweens and teens, it can also be particularly hard Some may have a need to be closer to home, practically (to help out) and/or emotionally. At the same time, your tween or teen may continue to want freedom and independence. Mixed feelings like these can trigger confusion about the wish to be close by yet wanting not to be at home. Sometimes there is a wish for things to just be normal.
Teens/young adults: Although they may look more grown-up, they are typically not yet functioning like an emotionally mature adult. Likewise, they may understand much more, but that does not necessarily translate into what they do or say. There is a lot going on in this stage of development. They can think about the future and imagine what that might be like as you continue to go through treatment. They can worry about finances and siblings, the care you are getting; they may struggle with “what ifs”- what if my mom getting sicker, what if you die; can I handle that, how is this going to play out in my life?
Talking opening and finding ways to connect is helpful, as they may need more from you than they let on. It is respectful to them to know the facts about challenges ahead and what might be some demands or changes in the present.
Additionally, given their age, they likely have a whole world separate from you, and you may feel in the dark. Teens can be self-oriented, so not necessarily thinking about what would be helpful. It is helpful to talk directly about expectations. You may have to clear about responsibilities and limits (for example, please make sure you are home by 6:00pm to help me with dinner, or I need a check in call or text at the end of the school day).
Given the focus in this blog on conversations with children, I want to include the following common question, as it is good to be prepared to answer in a way that fits your child’s age, what they are really asking about, and your situation. This is a big topic, but here is a start.
What if my child asks, “Are you going to die?” It is very tough to hear this, especially if a child is upset. However, it is helpful to welcome this question as you would any others; and it can open up a valuable time to talk about the present (what is stable, what is changing) and the future. Here are some suggestions:
“My doctors and I are not worried about me dying right now, we are focused on treating my cancer, but if something changes, I promise I will tell you.”
“I don’t think I am going to die anytime soon; however, it might be helpful for you and me to talk more about how things are going with my cancer.”
Ask about specific worries for now, and if there are bigger picture worries. There may be worries that are both concrete and emotional. For example: “Who will take care of me? Will I have to move? Will I have to change schools? I don’t know what I will do without you. No one will love me”
Children of all ages need to know that their worries and concerns are taken seriously, and that support and understanding are available.
Let your child know that you are focused on living your life the best way possible now. You might add that you are hopeful about enjoying every day and hope they will too. If this seems too hard, it may be helpful to find some support and a trusted person to talk with about the challenges in your situation.
It can also be hard to see the emotional challenges for your child of accepting your illness and the uncertainty of the future. You could share how you and your family/friends/supportive others are committed to dealing with this together.
You can let them know you will share information as you know it. It is not necessary to share all the details, but it is important to be truthful. This helps children prepare emotionally for the future.