This weekend I was at a work retreat with my husband, and got to talking with a fellow psychiatrist who treats patients with cancer. She asked me to create some content to help parents with cancer think about how to best talk about this topic with their children. Today’s blog and this week’s YouTube video are about this. 

Although today I’ll be focused on how to handle some specifics of talking about cancer and cancer treatments with kids, this framework can be useful for parents talking to kids about any medical issues, or loved ones grappling with illness, as the questions and emotional response and needs of our children in all such scenarios are similar. 

First things first, if you are a parent who has been diagnosed with cancer, it’s very important to get your own emotional support. Our brains and nervous system can handle adversity fairly well (meaning we return to our baseline relatively easily after a one time adverse stimulus). Uncertainty, on the other hand, tends to put us into a continuous loop of sympathetic nervous system (SNS) overload. What does that mean? 

Our bodies’ way to deal with threats is our sympathetic nervous system (SNS). Many things can activate the SNS - physical threats, emotional distress, anxious thoughts, trauma, and sometimes just sitting in traffic! 

When our SNS is activated, it results in the synchronized release of adrenaline and cortisol from our adrenal glands. These hormones course through our blood stream to our whole body and pretty immediately produce physical changes. In its strongest manifestation, this collection of physical changes is known as a “panic attack”, and includes some or all of the following:

-rapid increase in heart rate

-rapid increase in respiratory rate (often accompanied by a feeling that one can’t catch one’s breath)

-sweating

-dry mouth

-pupil dilation (leading to inability to focus on things close up), tunnel vision

-ears ringing

-cold, clammy hands (and feet)

-shakiness

-GI upset (nausea or urgency to have a bowel movement)

-a feeling you want to punch someone or something (“fight”)

-a feeling that you have to “get out of here” (“flight”)

-a feeling of impending doom (“freeze”)

Because of this, SNS activation is commonly referred to as a “fight, flight, or freeze” response. 

Most people will experience a panic attack at some point in their lives, and oftentimes these occur out of the blue. Why would that be? All of our bodies have evolutionarily preserved the ability to respond acutely in this way to a threat, because this response increased our chance of survival. Our bodies are primed to run fast and hard, and to lose less blood in the event of an injury to our extremities as a result of these changes, so our ancestors who did this best were the ones who survived. As a result of living in our (relatively) safe modern world (as opposed to out on the plains with the lions and tigers and bears), we sometimes have panic attacks as false alarms, and it can be quite distressing. But I’ll talk more about panic disorder in another blog. 

For today, it’s important to keep in mind that when we’re faced with a potentially life threatening diagnosis like cancer, our adrenal glands are activated. It won’t feel like a full blown panic attack all the time (thankfully that’s not possible to sustain). But with chronic adversity and uncertainty, as one experiences after a cancer diagnosis, instead of an SNS activation that feels like a pot boiling over (panic attack), we instead experience an SNS activation that will vary from feeling like a hot bath to a simmer to a rolling boil. 

This chronic elevation in stress hormones can present as:

-difficulty with sleep

-energy fluctuations - often low energy, but at times excessive energy that you spend spinning your wheels or organizing your spice drawer

-sugar cravings

-weight gain

-mood changes (depression, irritability)

To counteract SNS overactivation, we must activate our parasympathetic nervous system (PNS). This is the part of our nervous system that works to reduce all the effects of stress hormones. When the PNS is activated, our heart rate slows, our breathing slows, our digestion normalizes, we sleep deeply. 

The good news is that although the SNS is reflexive, the PNS can be controlled, taught, and practiced. It’s therefore very important to learn ways to intentionally increase activation of the parasympathetic nervous system (deep breathing, exercise, meditation, good nutrition and enough sleep, community with loved ones) and regularly practice which works best for you. As a parent, you need to take care of yourself first. If you’re in a state of significant SNS activation, your emotional temperature is going to be hot, your rational mind is not going to be in the driver’s seat, and it’s going to be hard to speak with your child calmly about your diagnosis and what it means for you and your family. 

OK, after that long intro, here are my thoughts on how to address a cancer diagnosis with a child. 

TL;DR:

-Keep the first conversation simple, short, and factual. Don’t expect them to be able to think or process much after getting shocking news. Wait until you can tell them calmly, you don’t have to tell them the same day you learn of a diagnosis.  

-Try to stay calm and present and reassuring

-Plan to have many subsequent conversations. Keep them age appropriate. Make the conversations part of a fun shared activity, so it’s easier for both of you to talk without getting overwhelmed. 

-Plan to revisit their feelings about your diagnosis often.

-Anticipate that older kids will have tough questions.

-Preview with your child often about what will be happening, and what to expect during your treatment. Think about how their life will be affected and address how you can support them.

-Answer all their questions honestly.

-Validate the frustration of having to live with uncertainty, but remind them that “we can do hard things”.

-Encourage them to express their love for you, and go out of your way to be patient and express your love for them, even if they’re acting out or withdrawn.

It’s imperative to keep the conversations appropriate for their developmental level and understanding, and plan to have several conversations over time. If you have a teenager, a six year old, and a three year old, you may have an initial conversation in which you tell them all what you’re dealing with, in broad terms, but you’ll need to have separate conversations in the future with each of your children, to support their needs according to their developmental ability. 

Just as you experienced when you got your diagnosis, it’s important to keep in mind that initial bad news triggers an activation of the SNS, and will do so in your child. Your child’s emotional “temperature” will increase, and your child may get upset and show this through tears, withdrawal, or fear. This is to be expected. When this happens, it’s important to just be present for your children, and stay with them as their bodies process this information. Keep in mind that if they are very upset when you first give them the news, they won’t be able to process much more information at that time. Just reflecting that this is a hard thing that you’re going to have to go through, but that you’re going to get through it together, is enough. Our thoughtful, rational minds are not in the driver’s seat when we are facing a threat, and bad news is a threat to the status quo. Therefore, it is best to continue the conversations later when they are calmer. Let them know they will probably have lots of questions that come up, and you’re happy to talk with them about anything that comes to their minds. 

In the preschool years, kids will need a very fact-based presentation, with minimal details. They are concrete, meaning the world is only what they can see, touch, and hear. Use the same language you use with them - for example, if you’re going to have a surgery, you will want to explain that you will have to go to the doctor, how long you will be there (keeping in mind for preschoolers their sense of time is basically “now” and “tomorrow” (which is a conflation of all the future), and that when you come home you will have an “owie” or a “band aid”, and how that will impact your physical functioning at home as you heal. They likely won’t know what “surgery” means, and may have never been to a hospital, so use terms like “I might be feeling a little tired” or “I might take a nap sometimes” or  “I will probably feel a little bit sick for a while”. 

Talk about what you’ll look like (Will there be a bandage or a scar? Where will it be on your body?), maybe even show them on a stuffed animal or lovey so they can visualize it. If their routine with you will be changed due to appointments, hospital stay, or other aspects of your treatment, preview with them what will change, who will be involved, and how it will work. Keep previewing these changes in the days leading up to any major routine shifts. Use modern technology and video calls with preschool aged kids while you’re away from home to let them see you and know you’re ok. If you usually read stories to your child at night, maybe you can record yourself reading to them so another caregiver can play the video when you’re not home. Leaving little notes or gifts for them when you’re away can also be reassuring to them to remind them of your presence.

If you’re going to receive medical treatment such as chemotherapy, talk to them about how it may change your energy levels, how you feel, and your appearance, but let them know this will be temporary. Let them know you’ll still be you, and you’ll still love them the same. Practice with your child changing your appearances and playing so that your child can learn that even when you look different, you are still you, and even when they look different, they are still themselves. Use hats, make up, dress up, whatever you want. If you’re likely to experience a major change in your appearance, such as hair loss from chemotherapy, keep previewing this change with them ahead of time. 

Talk to them about who will help out if you’re not feeling well, and let them know explicitly that even if you can’t pick them up, or if you’re having a day when you’re really tired, you’ll always want to give them hugs and kisses. Let them know that although you may feel sick sometimes, it’s not a sickness that they can catch, so they don’t have to stay away from you. Discuss the things you can plan to do together during this time. Maybe cuddling and listening to audiobooks, or watching favorite movies together. 

Preschool aged children may not have many questions, and may not appear that interested. Don’t mistake this for them not caring. They do care, and they will have concerns, they just may not have the language and emotional regulation to express this to you. 

Keep the conversations brief, and frequent, and try to otherwise keep your play and routines with your kids like usual. Preschool aged children don’t have long attention spans, so they won’t be able to sit with you and have a long conversation. Expect aspects of your news to come out in their play. Kids work out their feelings and ideas about how to handle them through play. Spending time in imaginative play with your preschool aged child can be a wonderful way for them to process this information (think dollhouses, “pretending”, dress up, etc.).

For school aged kids who aren’t yet adolescents, you can anticipate that they will likely have more questions than younger kids. They are going to be thinking more about how this impacts them, and have likely heard scary things about the word “cancer”, although they may not really be able to explain what it is. Be honest with them. Expect tough questions like “Are you going to die?” or “Who will take care of me?” and be prepared to answer these calmly. It may be overwhelming, and you may break down, or you may be tempted to deny such a risk. By planning in advance and caring for yourself so you can have these conversations at a time when you’re feeling calm and supported, you hopefully can have a more honest answer at the ready, and be able to deliver it to your child in a way that helps them feel maximally secure and safe. 

A response such as, “Well, all humans die, so, yes, I’ll die someday. But this cancer doesn’t mean I’m going to die right now, I have a team of doctors who are helping me and I expect to get better.” 

They may also wonder what cancer is, and you can explain in simple terms that our bodies are made up of tiny little cells, and sometimes a cell divides too much and doesn't stop growing, which is called cancer. Let them know that if a cell doesn’t stop dividing it can get too big, so there are treatments to help remove those cells (surgery, radiation) or kill those cells (chemotherapy, immunotherapy). 

This explanation of cancer also can be helpful to explain common side effects of chemotherapy, as you can explain that the medicines doctors prescribe to kill cancer cells also kill some rapidly dividing cells, and that includes the cells that make our hair, which sometimes leads to hair loss, and the cells in our gut, which can cause tummy aches. Let them know that once you stop taking the medicine, those healthy cells will come back to normal and you’ll feel better, but it will take some time.

As with preschoolers, playing with your school aged child during this time is important. Older school aged kids may not spend as much time “pretending”, but one on one time with your child in which you’re engaged in an activity together - cooking, baking, drawing, painting, building, playing games - are all excellent times to have short, reassuring conversations and to gently inquire how they’re feeling about your diagnosis and treatment. Previewing with them what’s to come will also help them handle changes. 

Adolescents are often the hardest age group to talk with about cancer, because they know the most, and may have adult-sized fears. 

The first conversation should be straightforward and factual, and you should allow your adolescent child time to experience a rise and fall in their SNS activation as a response, before having conversations about specifics. Let the first conversation just focus on ensuring their understanding, and supporting the feelings that arise in response with understanding and support, and without judgment.  Reassure them that they will have lots of thoughts and feelings in the coming days and weeks and months, and that you are having lots of feelings too, but that you’re going to get through this together.  

Older kids may enjoy helping out, so talk with them about what they can do to assist you, or the household during your treatment. They also will likely have worries about worst case scenarios (your death), and grown up worries about financial repercussions, etc. Even if they don’t state these aloud, it’s worth bringing them up and talking about them. One of the hardest things we have to do as parents is imagine what would happen to our kids if we weren’t around. Even if your prognosis is good, and I certainly hope it is, it’s important to think about the possibility of death and what that would mean for your family. 

Especially if you are a solo parent, older teens may have strong feelings about this, and it could be helpful to talk about who they would want to care for them if you were gone. It is hard to address this topic head on, it’s reflexive to want to reassure our kids and say “don’t worry, I’m going to be fine”, but the elephant in the room with an older adolescent is that we don’t really know that for sure. So, acknowledging that anything is possible, and letting your adolescent child know that their desires are important in your planning, and that you’ll take steps to honor their wishes, can go a long way in putting their minds at ease. 

Finally, a cancer diagnosis and treatment is a difficult journey. On the other side is also a new life identity to adjust to, that of “cancer survivor”. And, for your children, that of “child of a cancer survivor”. The big “C” is here to stay in your lives, the question is how are you going to handle it? 

I recommend asking yourselves how you can take this difficult experience and transform it into something empowering and positive for all of you, whether that be through maintaining connections with others who have dealt with similar diagnoses, supporting others going through cancer treatment, fundraising for cancer cures, promoting educational awareness, or celebrating anniversaries of being “cancer free”.

Invite cancer into your life, and give it a place at the table as part of your family identity. As with all things we fear, the closer you can bring it , the smaller and less scary it will seem.

Sending you all love.