How to Talk to Children about Cancer

Dr. Diane Reidy-Lagunes:

It's one of the hardest conversations to have with your child: explaining your cancer diagnosis. What's the right time to tell your child? And what is the best way to handle this incredibly difficult conversation? Let's talk about it.

Hello, I'm Dr. Diane Reidy-Lagunes from Memorial Sloan Kettering Cancer Center and welcome to Cancer Straight Talk. We're bringing together national experts and patients fighting these diseases to have evidence-based conversations. Our mission is to educate and empower you and your family members to make the right decisions and live happier and healthier lives. For more information on the topics discussed here, or to send us your questions, please visit us at mskcc.org/podcast.

Today we are joined by two clinical social workers, Hadley Maya and Natalie Santos. Hadley and Natalie coordinate the Talking With Children About Cancer Program here at MSK. They provide support and guidance to parents and families facing a cancer diagnosis. Hadley and Natalie, thank you so much for joining us today. And for the purpose of today's conversation, we are using the word “parent,” but we are referring to any adult with cancer who is a primary caregiver for a child.

Natalie, do you advise that a parent tells their child about the cancer diagnosis? And if so, is there a right way to do it?

Natalie Santos:

The short answer is yes. Generally, we do advise telling your children about a cancer diagnosis.

And before I jump into the answer, I just want to point out that today we're going to talk a lot about general guidelines and suggestions, but we really want to point out that if your child or your children have specific mental health issues or developmental concerns, we always, always advise consulting with your pediatrician or a counselor in the community for additional guidance and support.

Going back to the question, yes, we do advise telling your children about cancer. As a parent, you may feel anxious or worried to tell your children about your cancer, right? I often hear from parents that, “I don't want to scare my child,” or “I just want my children to live their lives without having to worry about me.” But what we know from the research and all our work with families is that the best thing to do is to be honest about your cancer diagnosis and to provide support and a space for them to be part of the conversation, just like any other big family issue that you would approach. This will help your kids feel more reassured and more supported.

Ideally, you'd want to tell them sooner rather than later, as kids can often pick up on any emotional shifts or any distress at home. Without explanation, their imaginations run wild, and this can cause some unnecessary anxiety.

It's really important to be honest and clear about what your illness is, to really differentiate your cancer from any other illness that your child might be more familiar with, like a cold or a stomach bug. You want to use really specific language like, “Mom has cancer in her breast,” or “Dad has a disease in his blood.”

Dr. Diane Reidy-Lagunes:

And is this usually one conversation or more than one conversation?

Natalie Santos:

One of the things we really like to reiterate over and over is that this should be more than one conversation with your children. It can be really helpful to have regular check-ins with your child about how they're feeling. Do they have any questions about the initial conversation? Do they have any questions about what's happening now? Really check in all throughout the process.

We also stress that it's important to prepare them for any changes in their routines. Ideally, you'll want to keep their routines as intact as possible for younger and older children with their responsibilities, sports, school, all that stuff. But we also know that cancer in the family can bring disruption. And so as best as you can as parents to prepare them for whatever changes might be coming in their day-to-day routines can help them feel more grounded and safer, which is what we always strive for with your kids.

Dr. Diane Reidy-Lagunes:

Particularly, for example, if you're the person in charge of pickup, right? If your little girl’s expecting that, be honest and transparent as to why that may be that you're not picking them up. So that kind of transparency I think could be critically helpful.

Natalie Santos:

“Grandpa's going to put you to bed tonight.” “Dad's going to get you off the bus.” “I'm not going to be able to make it because I'm going to be at the doctor's office.” Really clear and concrete preparation.

Dr. Diane Reidy-Lagunes:

Great advice. I'd like to hear from Emma. Emma was first diagnosed with breast cancer when her children were toddlers. 10 years later, it unfortunately recurred in her lungs. That time, her son Peter was 12, and her daughter Lexi was 10. Emma shares with us her experience in talking to her kids about cancer:

Dr. Diane Reidy-Lagunes:

What was your thinking the second time around about how to tell Peter and Lexi? I don't know if it's possible to prepare for that, but any advice on how you did that?

Emma:

It was really just trying to figure out what questions they would have. How would they receive the news? Because it's scary. It's scary to hear your mom has cancer. But we also didn't want to hide anything from them either. So being open has always been very important to us. I just think kids sometimes can think about things and imagine what it could be, and it could be worse than what it actually is. When we told the kids, we were very open. We told them it was in my lungs at that time. It was stage 4. I'm a very positive and hopeful person, and so I used my optimism in how we told them. And then just asking if they had any questions. I mean, I think that worked for us.

Dr. Diane Reidy-Lagunes:

I've heard from some parents that are dealing with these terrible diagnoses that it can get a little bit tricky in terms of, is there such a thing as feeling too vulnerable? And what I mean by that is, there's an enormity of emotions. It's anxiety, it's fear, it's sadness. And maybe crying will upset my child, or maybe sharing the anxiety and my own concerns can be somehow displaced on that child. And like you said, we're supposed to be the rock. We're not supposed to let the child see that. Are there any data to suggest that there is such a thing as being quote, too vulnerable?

Hadley Maya:

I hear this all the time; this worry from parents about especially crying. And again, it goes back to that parental instinct. You don't want your kids to worry about anything, especially not about you.

But I actually think that these conversations can be really powerful, good opportunities to actually normalize vulnerability and sort of model or teach healthy emotional expression. By having these conversations and by sharing some of your feelings, you can teach your children that it's okay to have sad or scared feelings when you talk about mom or dad's cancer diagnosis. It's okay to cry. It's okay to feel really whatever they're feeling. It’s actually helpful for children to know to some extent how their parents are feeling, and they don't have to guess. By sharing your emotions with your child, you're also showing them that you can be sad, you can be tearful, you can be scared without becoming totally overwhelmed by your emotions, which I think is an important lesson for children to learn in general, cancer or not.

We know that honest communication and providing a clear, reassuring picture of what's happening can really enhance a child's feeling of security and safety and also of trust, which I think is really important. It signals to your child that they can trust you to tell them what's going on. They can trust you to answer their questions, to give them support, and also that you trust them to be able to tolerate this information. And that creates a feeling of closeness among parents and children. That's really what kids want at the end of the day; to feel included, to know that you're all in this together as a family and they're not alone.

We also recommend, if and when possible, to have your own support as a parent. This is an incredible emotional burden for you to carry as the person going through it. Being able to practice this conversation or to talk about it before you talk to your kids, with your partner or another adult that you feel close to, your social worker, anybody that you can trust to be there for you. And this shows your children that you have other adults there to support you too, and to make it clear to them that it's not their job to make you feel better.

Natalie Santos:

And just to add to that, I always tell parents that part of these conversations is to remind your kids that their responsibilities stay the same. Their job is to go to school, be a kid, socialize, have fun, do all the things they would normally do. That even though things feel scary and different, their role remains. And that's how they feel safe to go ahead and just be a kid.

Dr. Diane Reidy-Lagunes:

I think there's a lot of firsts, right? So first, you have to explain to your children that you have this diagnosis. Then you have to explain that there may be some side effects, such as hair loss and other things. Any thoughts or advice on how a parent may explain what's to come, particularly as it relates to some of the side effects of the treatments?

Natalie Santos:

Preparing your children for any of the changes that might be coming can be really helpful, to have them have some predictability in this kind of new and scary, uncontrollable life they're living in some ways. Even a simple explanation like, “Mom has to have really strong medicine to fight the cancer, but unfortunately it also affects the healthy parts of her body too, like her hair or her stomach.”

Often we tell parents that they can kind of reframe this in a way to say that, “You may see these side effects that I'm having and they don't look so good, but it is a sign that the treatment's working as it should be.”

Of course this will differ from family to family, but I've often brainstormed with parents for ways kids can be part of the process in an effort to make it feel a little less scary. So depending on someone's comfort level, I've talked with parents about having a hair-cutting party right before treatment starts to allow the child to cut mom or dad's hair in a really funny way, or put different colors in it right before the hair loss takes hold with the chemotherapy.

We had one family that we worked with where the dad really could only tolerate blended food or blended drinks. He was really nauseous, and he couldn't hold much down. So his 9-year-old daughter got super creative in conjunction with mom and created a smoothie menu for him. Every day, different smoothies to offer to him. She would bring him the menu, she would draw it, she would help mom make them, and it kind of just helped her be part of the process. Rather than it being this big scary thing that you can't come near or talk about, it allows them to have some control in what feels really uncontrollable or scary at times.

Dr. Diane Reidy-Lagunes:

Let's hear from Lorena who was diagnosed with breast cancer when her daughter Hannah was 9 years old. Lorena needed to undergo surgery and chemotherapy and let's hear how she broached the subject of hair loss and change in appearance for her 9-year-old Hannah:

Lorena:

When I said to her that I was going to change physically, she was very confused and she was very afraid. So I said to Hannah one night, “Just close your eyes.” She closed her eyes and we start talking. Hannah said to me, “I'm so afraid that if you not going to have hair, you're not going to be the same.” And I said, “Hannah, your eyes are covered, and my eyes are covered. What do you hear?” I said, “Do you hear my voice?” And she said, “Yes.” “That's the person that is in me. It's not my hair. Like I can lose my hair today and I will get it back in a year or two years. But your mom is a person that lives inside me.” So I kind of taught her how to identify the outside person from the inside.

Dr. Diane Reidy-Lagunes:

I love that so much. Thank heavens, Lorena is cancer-free and Hannah is a happy and healthy 17-year-old today.

Along the same lines of being open and honest and also being mindful of not scaring our children; it's an enormity to talk about a cancer diagnosis and side effects of treatment, but to talk about the topic of death as a parent is something that is just unimaginable. Any advice on that, particularly when the child may ask the parent if they could die from their disease?

Natalie Santos:

Yes, it is one of the questions we get asked most often. It's one of the biggest fears parents have. And what we want to say is, “Of course not honey. I'm going to be just fine. Everything's going to be okay. Don't worry.” But in reality, it's not always the most helpful thing.

As parents, we really want to avoid making promises that we cannot keep. The idea is always to maintain hope and provide reassurance while still being honest. So we can always use this as an opportunity to educate our kids that there are many different kinds of cancer and that not everyone dies from cancer. In fact, many people don't die from cancer.

Another way to answer this question could be something like, “Right now, I'm getting excellent care. I have amazing doctors who are doing everything they can do to help me. Right now, they do not believe I will die from this cancer, but I promise you that if anything changes, I will let you know.” So to really reassure them that they're part of this conversation with you.

Of course this conversation becomes much more challenging when the treatment is not working, and the prognosis is not good.

I would encourage responses to this to include really concrete information as well as your feelings about it – the sadness, the anger, the fear – and also reassurance for your child or children that they will be okay in the care of whoever they will be in the care of after you pass. For example, we can use phrases like, “The medicine has not worked for me, and that means the cancer will continue to grow in a way that I will not be able to live anymore, that I will die from the cancer.”

You'll also want to remind your child again that this has nothing to do with anything that they did, that you don't know why this has happened, that you're really mad or really sad or both about this.

And most of all, reiterate how much you love them and how much you wish and want to be alive to watch them grow up, with the caveat that, “If I do die before I get the chance to see you grow up, I feel really good that mom, dad, grandma, grandpa, will be there for you. I love them very much, and I know they love you very much, and that they will take really good care of you.”

Dr. Diane Reidy-Lagunes:

We heard from Emma earlier and she shared what it was like to be diagnosed when her children were toddlers and then diagnosed again when her kids were teens. We spoke to Emma and her son Peter this summer, just before Peter was heading to college. At the time of our conversation, Emma shared that her cancer had unfortunately spread to the spinal fluid, which is what we call leptomeningeal disease. Let's take a listen:

Emma:

We always said to the kids, if I ever got a timeline, we would tell them. And this was the first time we're looking at months, not years. So I think sharing that with them, you know, we said we would and we did. It was very, very hard. And I think for them to hear it was probably equally hard, because nobody wants to hear that. I mean, complete transparency, we were all crying. I think not being afraid to show emotions and cry is an important thing, because it is scary. I don't want to be going through this, but I don't want to also be like showing the kids that I'm unaffected. Again, this goes back to being authentic. There's nothing wrong with crying in front of your kids around this, at least in my opinion. And I think it just brought us closer.

Peter:

What was going through my mind was just to maximize what I can do with her now. Of course I'm scared and everything, but I just tried to stay optimistic. Also, I'm going to school in like two weeks, so for all I know, it could be the last time I – I don't want to think about that – but it could be the last time I see her. So I just want to spend as much time with her as I can.

Dr. Diane Reidy-Lagunes:

It’s so hard to think about that. Like you said earlier, the kids want to be kids. Their responsibility is to be kids and not to be care providers.

You alluded to this earlier, that there's not a script on how to talk to your kids about cancer. But there may be some age-appropriate conversations. Any advice on how you may tailor your approach? Emma's able to really have these real open and honest conversations now that her kids are adults, essentially; very, very different than when they were toddlers or teenagers.

Hadley Maya:

Again, we are always reminding parents they're the ones who know their children best. At the end of the day, that's what matters the most. But what we can do is offer some guidance based on research, based on our own clinical experience. And this guidance is usually based on age and maturity level of children.

So first, thinking about young, young children – infants and kids up to about age 3 – we know that of course they can't understand what cancer is, but they can certainly sense changes at home and they're especially sensitive to feelings of separation or abandonment. So the most important thing is just lots of physical contact and reassuring attention and love that's ideally provided by the parent or primary caregiver. But if and when that's not possible, if a parent's in the hospital, it can be given by another trusted adult. Also preparing them for what's happening today, reassuring them that, “Mommy and Daddy will be back soon,” if that's true.

And then as kids get a little bit older – so let’s think about ages 3 to 5 – they will understand obviously more than a baby or a young child, but they'll still really struggle with the idea of cancer and the complexity of it, especially when it comes to being able to distinguish it from other types of illnesses like coughs, which is why it's important, as Natalie touched on earlier, to help them make that distinction and reassure them again that they can't catch it. They didn't do anything to cause it. That comes up a lot, I think more than parents expect. So that kind of reiteration is important.

Again, use clear and simple communication. This can often be aided by using books and diagrams and drawings and play and dolls or toys.I always remember I worked with this family who used a doll to help their child understand mommy's chemo port because she was very distressed by the idea that she was going to have to be careful around her mom after she got the port placed. They used a doll, and they attached a string to it to show her where the IV would be. It was very creative and it ended up being really helpful for their daughter. It sort of took the mystery out of it and the fear for her.

Often children need to hear this multiple times. You may need to check in on them to make sure that they understand what they've heard or to even schedule kind of regular check-ins. Sometimes parents use bedtime as an opportunity to just see how the child's feeling and they can share worries or ask questions. Routine is always important, especially at this age and preparing them for any changes.

Most importantly, and this is across all age groups, just so much love and reassurance that they're loved and will always be cared for no matter what. That's a promise that you can hopefully keep.

And then as children get older – so we kind of move into a 6 to 8-ish range – they're thinking a little bit more logically. They can understand and process illness a little bit better. They can understand the difference between real and pretend. They can understand a little bit of cause and effect. So there's some worry for kids that they did something to cause this. Maybe a child could think, “I said, ‘I hate you’ to Daddy and that's why he got cancer,” or “If I really hope that mommy gets better, she'll get better.” So trying to help take the feeling of responsibility out of it for them, that's hugely important at this age.

As kids get older and older, they can understand more concrete information about the disease; the name of it, the care plan or the treatment plan, the symptoms or the physical changes that the parent might experience, and even some information about the prognosis. As kids start to be able to understand concepts of future, that can become comforting to them, to know what 3 months means, to be able to look towards the future, especially as we get into the 9 to 12 age range, to understand this cause-and-effect piece too. So, “Daddy is tired from his medicine,” so that they understand why certain behaviors are changing, and again, they don't feel responsible and they don't feel as worried about it.

As kids get older, especially when we get into teenage years, they can just understand more. They have more questions. I always encourage parents to ask their kids if they have questions for their doctors. So before they go to a doctor's appointment, does the child, especially if they're older, want to give their parents a list of questions for the doctor so that they can feel included? Do kids want to see a picture of the treatment suite or of the hospital, just so that they are taking some of that mystery out of it? You can take your kids' lead on how much they want to know, but kind of opening the door for inclusion.

One quick note on the importance of other adults – they might have a teacher that they really trust or a guidance counselor at school or a coach, or just another family member who they feel safe with – as kids get older, they may feel less comfortable sharing with their parents how they're feeling, but they're okay sharing with their coach or their aunt or somebody at school. So give them or help them foster those healthy relationships.

Also with their friends, being able to understand what's normal for a teenager. It's okay if they want to spend more time with their friends, if they feel more comfortable talking with them versus their parents. And just kind of allowing for that, as Natalie said before, that kids are allowed to be kids and that they are developing normally as well.

Dr. Diane Reidy-Lagunes:

I think that's a perfect segue to hear from Michael, whose wife Annika was diagnosed with an advanced type of tongue cancer. At the time, they had 4 children ranged in age from 10 to 16. Let's take a listen:

Michael:

I think very early on we wanted to wait until we knew definitively what the story was before we took the decision to sit the kids down and have that conversation. I remember when we had it so vividly. “You know, we've gotten this news. Mom has cancer and we're working with the doctors. This is what they've told us. This is what they've told us the treatment plan is.” At the time of her diagnosis, we had 4 kids from 10 years old up to 16 years old, and our conversations with each of them would be slightly different depending on the kinds of questions or the maturity of each of the kids at that point in time. What we didn't want to do is pretend that something wasn't going on. We thought together that ultimately once we knew, being honest with where we stood and what the plan was, was the right answer.

Dr. Diane Reidy-Lagunes:

Sadly, Annika passed from her cancer. Her daughter Sophia, who was the youngest, the 10-year-old at the time, is now 18. She reflects on her experience, which I think is very powerful. Let's take a listen:

Sophia:

I was really young, and I think it was hard for me to deal with, definitely. I do still have a little bit of regret because it was really hard for me to see my mom like that. I was in like fifth grade when she was diagnosed, and so I think naturally one of the ways that I reacted to that was sort of by running away and just avoiding it. It hurts me to say, but I sort of turned away from her in a sense. I didn't want to be at home. I didn't want to be around anyone. I wanted to pretend like everything was normal. At the time, that felt like that was the right thing to do, but as I look back, I really do wish that I had spent those moments with her.

I really wish that I could go back and tell her that like, it wasn't her that I wanted to run away from, but that I just wanted her to be better and I wanted to come back when everything was okay. I've talked to my dad since about this and he's sort of said that throughout everything mom understood and knew how everyone was coping with it. But I wish I could tell her how I was feeling.

Particularly as I am 18 now and I'm trying to sort of be my own person, there's a lot about my mom that I wish I had asked, like a lot about her that I wish I had known. I didn't have those conversations because I was so young. And I think the hope was just, “You know, we'll talk about it when she's better,” but ultimately she didn't get better. And I think that's unfortunately the case for a lot of people.

Dr. Diane Reidy-Lagunes:

It’s so hard to listen to that. She's a 10-year-old kid and she didn't want to be around at the time because she just wanted the mom that she knew and loved and figured she'd go back when that mom came back.

How do you deal with that? Or how does a parent address when a child reacts differently than you expect, or just react like a 10-year-old, without really understanding the whole implications of what's going on?

Natalie Santos:

It’s just important to remember that for most families, this is unchartered territory. We really can't predict how our children are going to react or respond. The best we can do is support them through it.

We’ve all been talking about this open line of communication, and of course, with older kids or teenagers it can be challenging to communicate with them. They may have feelings that are harder to share with their parents than they might be with a friend or a teacher or someone. Remind them that they can rely on other trusted people in their lives other than you, and that no matter how they're reacting, as long as it's not harmful to them or to other people, they can take the time and space to process the information however they need and that you love them and that you're there for them if or when they're ready.

Hadley Maya:

I would just add, because Sophia talked about it so beautifully, that in these situations where sometimes kids don't have the chance to talk with their parents in the ways that they wish they had, that that sometimes falls on the other parent or on somebody else in the family to have those conversations, to let them know and reassure them that, “Mom knew that you were processing in the way you needed to, that she loved you no matter what, that it's okay that you weren't there in the way that you wanted to be.”

Keep sharing as much as the other parent can keep sharing about that parent. Like, “If you have questions about her, come to me. We can talk about her. We can keep her alive in that way.” So there's another part to this work that continues beyond the death of a parent. I'm glad that Sophia was able to speak to that.

Dr. Diane Reidy-Lagunes:

The other thing that Michael shared is that with 4 kids, they had the support of each other and the love of each other and they knew those kids more than anyone, but they didn't feel like they had resources readily available to help guide them in that. And like you said, there's no prescription per se, but if folks are not MSK patients and don't have access to your incredible program, any advice on where they might be able to seek help?

Natalie Santos:

Many medical centers that have oncology practices do have social workers affiliated with their teams, who can hopefully help guide them to certain resources that exist outside of their medical centers. Our Talking With Children About Cancer Program’s website is outward facing. Anyone can access our website, MSKCC.org. Just search for, “Talking with children about cancer,” and there's a whole slew of information.

We also have a whole “Resources” page for different books that exist that we often refer families to read – books for parents, books for children – to help guide you in what to say, and also to help children understand what you're saying essentially.

Hadley Maya:

There are also community programs that are accessible to patients and families nationally. So there are summer camps and programs that kids can attend who are affected by cancer in their family, or maybe who have lost a parent to cancer.

There are support groups in New York. Red Door Community, which is formerly Gilda's Club, has support groups for families and for children and for teenagers. Same with CancerCare. The Bright Spot Network is also a fantastic national organization. So there's support out there for both parents or adults and for families, whether that's a book that you order online and just take your time with, or a program that you actually engage with and attend a support group at. It's sort of all different levels of readiness and engagement.

Dr. Diane Reidy-Lagunes:

Any final thoughts?

Hadley Maya:

Just a note on the resilience of children. I am amazed by it every day doing this work, that sometimes we don't even give kids enough credit for how much they can just process and intake and sort of live through and recover from. I think we have a lot to learn from kids in these conversations. Just try to remember that resilience and trust your kids to guide you in these conversations.

Natalie Santos:

One last thing I would say is, you know your children best, right? You have that gut instinct about how your child is doing, how they're coping, what they're feeling, and to trust that and to not forget about it, even though all this chaos is going on.

Dr. Diane Reidy-Lagunes:

Natalie and Hadley, thank you so much. I am so grateful that there are people like you in the world that are doing this important work for all of us.

Natalie Santos:

Thank you so much for having us.

Hadley Maya:

Yes, thank you.

Dr. Diane Reidy-Lagunes:

Thank you for listening to Cancer Straight Talk from Memorial Sloan Kettering Cancer Center. For more information or to send us your questions, please visit us at mskcc.org/podcast. Help others find this helpful resource by rating and reviewing it on Apple Podcasts or wherever you listen. Any products mentioned on the show are not official endorsements by Memorial Sloan Kettering. These episodes are for you but are not intended to be a medical substitute. Please remember to consult your doctor about any questions you have regarding medical conditions. I'm Dr. Diane Reidy-Lagunes. Onward and upward.