When Maimah Karmo was diagnosed with stage 2 breast cancer at 32, her family and friends urged her not to tell her 3-year-old daughter, Noelle. On a mission to empower her daughter and herself, Karmo chose otherwise. Now, 10 years later, she says she’s never regretted her decision to be open about her diagnosis.
“We teach our children how to be honest, we teach them the importance of being authentic to their true self,” says Karmo, who lives in Aldie, Virginia. “How authentic would I be if I hid my illness from my daughter?”
Karmo, 42, who’s been cancer-free for 10 years, has dedicated her life to helping other women affected by breast cancer. She founded the Tiger Lily Foundation, a nonprofit that aims to empower, educate, advocate for and support young women fighting the disease.
Hers is a story that mirrors those of others who have faced the daunting decision to talk to their children about any cancer diagnosis and what it means for the future. Experts who treat women like Karmo every day explain ways you can share a breast cancer diagnosis with your child based on his or her age and your personal preference:
Children 5 and Younger
“I told [my daughter] from the time she was 3 that I had a boo-boo, and I had to have surgery,” Karmo says.
That’s the kind of simple language that appears to help kids younger than 5 understand immediate changes, explains Dr. Elisa Port, chief of breast surgery and co-director of the Dubin Breast Cancer Center at Mount Sinai Hospital in New York.
Children younger than 5 have little capacity to understand the complexity of cancer, says Port, author of the newly published book “The New Generation Breast Cancer Book: How to Navigate Your Diagnosis and Treatment Options — and Remain Optimistic-in an Age of Information Overload.”
“The only thing they need to know is if the parent or mother will be away for a period of time, in the hospital, staying overnight a day or two,” Port says. “In general, keep explanations simple, and limit it to how it will affect them immediately.”
When Karmo started undergoing chemotherapy, she told her daughter she would have to take medicine that might make her hair fall out. She used the popular children’s TV show “Caillou” — which her daughter adored — as an example for how she might look after a couple of rounds. (The main character is bald.)
But when she picked up her daughter from school, wearing a wig to disguise her freshly shaved head, Noelle recognized something wasn’t right. When Karmo showed Noelle her head, her daughter was frightened and refused to go near her.
“This was very hard. I’m very close to her — I kiss her and hug her a lot,” Karmo recalls. “To have her run from me was very heartbreaking.”
She used the experience as a teachable moment, explaining to Noelle that she may not always look the way her daughter thinks her mother should, but that Noelle could love somebody no matter what they look like. Karmo believes she wouldn’t have had a chance to address the important lesson of acceptance and compassion to her young and impressionable daughter if she chose to hide the disease.
Children 6 to 10
Kids ages 6 to 10 have a greater capacity for understanding the illness, but they may be the most difficult age group to talk to about cancer. That’s because “you have to balance what you tell them with what they’ll understand on a more concrete level,” Port says. “They’re more concerned about how it is going to affect them and their schedule.”
Children in this age group might be concerned about whether they’ll be left alone for long periods of time while mom is undergoing treatment, and who will take care of them or take them to after-school activities. Keep their schedules as stable as possible, Port says, to prevent negative assumptions about mom’s well-being.
“If there are misconceptions or they have unrealistic fears, reassure them. Let them know if they have fears, you do too,” says Susan Brown, a registered nurse and managing director of the Health and Mission Program Education at Susan G. Komen Foundation.
Port recommends parents have a plan in place before they discuss any information about their disease with their children — at any age. “To talk to a child when things are still very much unstable is very unsettling to them,” Port says. Once they’ve formed a plan that will ensure their child feels safe and supported, parents will also be better equipped to speak about the situation confidently with their kids.
It’s also smart to talk to your child’s school about the parent’s diagnosis, so teachers and staff can be alert to performance issues that might follow the cancer news.
Adolescents and Teens
It’s important to recognize that your teen will probably seek information on breast cancer through a Google search. He or she might even have friends whose mom or dad has cancer too. If your son or daughter has access to your cellphone or tablet, know they might look through it and discover medical information not meant for them. That’s why it’s important to “tell your child what you want your child to hear on your own terms,” Port says.
Consider letting your teen know when you’ve scheduled a procedure and when you’ll be home from the hospital, and explain what might happen in the immediate and distant future, such as physical changes resulting from chemotherapy or surgery, including weight changes, hair loss or a loss of breasts.
Some teens may worry about how the cancer diagnosis will impact their future — whether they’ll still be able to attend college, enter the military or start a job after high school — or if they’ll need to stay home to take care of mom.
Brown says another question that’s more difficult to address is: Will mom die? “It’s important to be open and honest, but use caution about not making promises that you aren’t sure you can keep,” she says. “That question can be answered in an honest way, but still hopeful.”
For example, you might say, “I’m not sure, but I have a really great doctor and I’m going to work with [him or her] to do everything I can to overcome this breast cancer,” Brown says, adding that your choice to address this varies on your comfort level and how well you know your child.
Teens may find solace in speaking to another adult, and it’s important to make other family members or friends aware that your kids may reach out when they feel inadequate talking directly to mom, especially when she’s sick.
If your son or daughter wants to be of service, consider giving him or her chores around the house. These will keep your kids busy and fulfill their desire to help their sick parent, while also making your plate less full, Brown says.
Educate Without Fear
As children develop into teens and young adults, they may question their likelihood for developing breast cancer as well.
“It’s important not to focus on the fear factor,” Karmo says. “Many people say, ‘I don’t want to scare my child.’ Nothing is more empowering than telling [your child] this is what could happen; it doesn’t happen often, but if it did, know your body.”
Karmo says it’s important to engage your daughter in conversation about early detection. To simplify matters, explain to her that just like brushing your teeth or combing your hair, it’s important to take care of your body on the inside and outside.
“My mother taught me how to do self breast exams at 13; that’s why I do them every month. That’s how I found my lump in the shower,” Karmo says, adding that she talks about self-exams with Noelle, now 12.
If a woman has a monogenetic mutation like the BRCA gene, her young adult daughter may ultimately decide she wants to undergo genetic testing to learn if she, too, has that mutation. “That’s a very big decision for a woman to make,” Brown says.
Parents can help by giving their kids books designed to help them understand the illness, or taking older young adults to a genetic expert or mom’s doctor to evaluate what the risk means for them. Be sure to ask children of any age what they’re worried about, and if they’re feeling scared or angry.
For more information on helping your child cope or talking to your family about breast cancer, visit the Tiger Lily Foundation or the Susan G. Komen Foundation , or speak to your health care professional.
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How to Talk to Your Child About Breast Cancer originally appeared on usnews.com