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The U.S. is expected to hit a bleak milestone this year: For the first time, more than 2 million people will be diagnosed with cancer. More than 600,000 will die, according to projections from the American Cancer Society.
Yet when you consider how many people are affected by a single diagnosis, those numbers balloon. As people with cancer grapple with fears about their health, they often describe being equally anxious about how their news will affect their family. When Catherine, Princess of Wales, revealed on March 22 that she was being treated for cancer, she emphasized that she and her husband had “taken time to explain everything” to their three young children “in a way that is appropriate for them.”
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Whatever your treatment might entail, it’s helpful to know how to discuss your prognosis with your loved ones so you can prepare them for the road ahead, as variable and unknown as the future may be. That’s especially true with children, who are often more intuitive than you may realize.
“Kids are incredibly perceptive on picking up that something is off,” says Dr. Amishi Y. Shah, a genitourinary medical oncologist and associate professor at the University of Texas MD Anderson Cancer Center in Houston. “In general, being transparent about what’s going on with kids is a good policy.”
Of course, each family will talk about a cancer diagnosis with children differently. “There’s not necessarily a one-size-fits-all [approach],” says Amanda L. Thompson, chief of pediatric psychology and director of pediatric programs at Life with Cancer, a northern Virginia nonprofit providing support and education for people affected by cancer. “What you’re going to disclose is going to depend on the age of your child, their maturity, their own experience with or exposure to illness within the family or close friends, and more.”
Here, cancer experts and mental health professionals share tips for approaching this conversation with care and compassion.
Read More: Kate Middleton Had to Tell Her Kids About Her Cancer Diagnosis. These Parents Know What That’s Like
Plan ahead
This probably isn’t the best time for an off-the-cuff, improvised conversation, notes Shannon Coon, children’s program coordinator at the cancer support organization CancerCare. “Write down what you want to say before the conversation happens, and practice prior,” she says. That might make it easier to speak in a calm and reassuring voice when the time comes, she says.
Think about who you might want to have with you, as well, Coon adds: Do you want to speak with your children individually? Do you want your partner to be there? Should any other adults in their lives be present?
Create a welcoming environment for the conversation
Choose a calm, safe space and time to bring up your diagnosis with childrens. Make sure you have plenty of time to answer questions without having to rush off to another part of your day, says Thompson.
Picking your moment counts in other ways too. It might help to identify when your family already comes together in a way that feels “connected, comfortable, and normal,” says Max McMahon, a licensed independent clinical social worker at the Lank Center for Genitourinary Oncology at Dana-Farber Cancer Institute in Boston. “Is the dinner table when good conversations happen? Is it when you go out for bagels on Saturday mornings? When do your kids seem to want to talk about things or process their day?” he asks.
Whatever the setting, your goal should be to welcome discussion. “We’re creating an environment where it’s OK to talk about the hard things out in the open,” Thompson says.
Stick to age-appropriate terminology
Tailor the language you use based on the age of the child you’re talking to. For a young child, that might look like: “‘Mommy is sick. She has something called cancer. The doctors are doing everything in their power,’” Coon says. You might even point to the sides of your back and explain the cancer is in your kidneys.
Older children will be able to understand more, so the conversation may be more detailed, but they’re also in a different emotional space. “I’ve found the most difficult [scenario] is when the kids are teenagers,” says Dr. Toni K. Choueiri, director of the Lank Center. “They’re going through a lot of changes, and now you add to it.”
Use concrete language
It can be tempting to gloss over unnerving topics, but using the word “cancer” can actually help defuse the situation, Thompson says. “Harry Potter said ‘Voldemort.’ He gave the big bad villain his name to take away some of his power. We have to use that word matter-of-factly. It is important for children to know it’s something they’re going to hear.”
Similarly, it’s helpful for children to hear clear language about death, “even though it is incredibly difficult … especially if you’re the parent who is ill and facing your own mortality,” she adds.
That doesn’t mean you have to state simply, “I’m dying,” McMahon says. You might say something like, “This is a serious, advanced disease, and I’m getting treatment for it, [but] this disease can’t be cured, and I will die from it,’” he says.
Using euphemisms or otherwise prettifying language can lead to children interpreting things too literally. “Sometimes children think ‘heaven’ is a place they can visit,” Coon says, or that they can go find a loved one who has been “lost,” Thompson adds.
Discuss visible physical changes
Immunotherapy and targeted drug therapy for cancer can cause side effects like joint and abdominal pain, diarrhea, loss of appetite, and fatigue, all of which children might notice. And if they do, it’s better to be upfront about it. “Otherwise, they’re wondering in silence,” McMahon says.
Some changes will be more obvious than others. For example, Choueiri says, if you’re dealing with diarrhea and your home has only one bathroom, it would be nearly impossible to hide the fact that you’re using it every hour.
But even if side-effects are more nuanced—maybe you’re walking more tenderly because you’re in pain, or you’re losing weight because you’re not hungry—embrace opportunities to explain where you can. You might try: “‘Dad is in pain. Do you want to know what’s happening inside Dad’s body?’” McMahon advises. Some parents worry this will create more anxiety for a child, “but kids often have anxiety about what they don’t know, so information is helpful for most children.”
Read More: Kate Middleton Is Receiving Preventative Chemotherapy. Here’s What That Is
Explain how their lives may change
Consistency generally makes children feel secure, and cancer can certainly disrupt your schedule. Aim to explain to children what you expect to shift in your routine. “They’re going to want to know, ‘What does this mean for my family and what we do? Does this mean someone else picks me up from school? Are we still going on the trip we take every year?’” Shah says.
Reassure kids that even if someone else will handle school pick-up, their needs will be met and they’ll still be cared for and loved. Consider sharing your treatment calendar with older children, so they can anticipate some of those changes on a weekly or monthly basis.
Answer questions honestly
After you’ve disclosed your diagnosis for the first time, lean on a child’s curiosity to shape your ongoing conversations. Answer questions as they come up, then pause for a moment to see what other questions arise (if any). Kids will likely come up with questions about a parent’s cancer that you don’t know the answers to. “The reality is, we probably won’t have all the answers. Often our physicians don’t even have all the answers,” Thompson says.
In those cases, it’s OK to tell a child you don’t know. “Let them know that when you do know, you’ll get back to them as soon as possible,” Coon says. You can show them you mean it by keeping a running list of unanswered questions and bringing it to your next visit with your oncologist.
Check in
Just as you’ll need more than one visit with your oncologist over the course of treatment, you’ll likely need more than one conversation with a child to fully discuss their feelings about your prognosis. Touch base with specific questions that welcome their curiosity rather than broad questions like asking how they’re doing, suggests the American Cancer Society. You might start with a question like, “‘What changes have you noticed with Dad lately?’” Choueiri suggests, or “‘You’ve noticed Mom has had to go to the hospital more. Do you have any questions about that?’” McMahon says.
Older children can take even more ownership in shaping these conversations. “I often recommend asking how they want to be updated along the way,” Thompson says. “Do they want to know the details? Do they want to talk about it in the morning or the evening? What would be most helpful for them?”
Lean on the services meant to help
Your medical team can likely connect you with support services at your treatment center to assist you in navigating these difficult conversations. You might have oncology social workers, nurse navigators, and other experienced staff members available to you and your children. “It’s our job to guide you to the resources that can help. You don’t have to do it alone,” Shah says.
That’s especially true if children start exhibiting any signs that they need more support than you’re equipped to give them, such as experiencing changes in sleeping or eating patterns, social withdrawal, fighting with their siblings or friends more often, or more frequent bedwetting.
Organizations like the American Cancer Society have information and support groups for parents and caregivers. Nonprofits like CancerCare offer children’s programs free of charge. And there are even Facebook groups for people with specific types of cancer where you can find comfort in knowing you’re not alone.
Talking about a parent’s cancer with children is never easy, but it’s helpful for your kids and your relationship. “In general, know it’s going to be difficult and emotional in the moment,” Coon says, “but it’s so important to have open and honest conversations throughout the cancer journey.”
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It can help to choose your words wisely—but you don’t have to shy away from heavy conversations.
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Health – TIME
