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Answers from Other Experts About Children and Cancer

Q. Last week I told my son that I had cancer and we have barely spoken about it since. What can I do to help support my son?

A.

As a caring parent you want to help your son understand what you are going through. Children want to know the facts and how they will be affected.

Children, and especially teens, are mostly focused on themselves and their own day-to-day life. You may notice your child is still focused on school, friends, and other activities. That doesn’t mean your child is ignoring your diagnosis. It takes time for a child to mentally process this kind of information and he may not completely understand the implications of your diagnosis until he notices physical changes or if there are disruptions in day-to-day life. Here are some age-specific strategies for communicating with children about cancer:

If your son is under 5, he is likely to ask you a question or bring up your cancer when he is most closely engaged with you one on one. His questions will most likely be brief and concrete, such as: What does your cancer look like? Does the medicine taste bad? He may be scared that cancer is contagious or that he might get cancer too. Your answers should be brief, factual and in words he understands.

Children ages 6-11 typically are more interested in the mechanics of treatment. The “killing” of cancer cells and seeing your treatment as a “battle” or “fight” — whether or not you yourself use these images — is very likely how your son will think of your experience. Some parents are comfortable using this language; others may choose to describe their experience using non-violent imagery. Either way is okay.

If your son is a teenager, he will be wrestling with a variety of conflicting thoughts and feelings. He will want to ask questions but may not want to add to your stress by asking questions or showing concern. He may feel sad about the situation but think it is “unmanly” to have that feeling. He will be certain that none of this “shows” at all but you will see it clearly in his face and demeanor. If you ask him questions he will most likely tell you that he is “fine.” Try not to force the conversation and give him space to process his emotions on his own.

No matter what age your son is, he will let you know when he is ready to talk. There may be times when you need to start the conversation because you are going to lose your hair, or need to rest more, or will be hospitalized. In these cases, be factual, brief, and use words you know your son will understand. Children and teens like to be kept in the loop and the more they are informed, the less anxious they will be when these changes happen. Also, periodically check in with your son, ask if he has questions or wants to talk in order to show him that you are comfortable talking about it and that you are available to talk whenever he is ready.

Here are some additional tips:

  • Let your child know that you are always available to answer their questions
  • Try to keep family time consistent. When possible, eat meals together, have a movie night, etc.
  • Ask your child if there are aunts, uncles, school counselors or other professionals (social workers, psychologists) that they would like to talk to about how they are coping. Sometimes children are more comfortable talking to someone other than the person who is diagnosed
  • Find age-appropriate support groups for your children that will help them feel connected to other children who have a similar experience

Here are some publication and book recommendations for further information:

  • Helping Your Children Cope with Your Cancer by Peter Vandernoot (Hatherleigh Press, New York)
  • Kemo Shark by Kidscope, Inc. (www.kidscope.org). A cartoon illustrated book featuring “Kemo” the shark who explains how chemotherapy works to fight cancer. Also available in Spanish. Ages 3-12.
  • What About Me? A Booklet for Teenage Children of Cancer Patients by Linda Leopid Strauss. A book addressing the specific needs of teens when their parent has cancer.

Q. I have a 14-year-old son who doesn't seem to want to talk about my cancer at all. I know it's hard for him, but it also can't be good for him to keep things bottled up. What should I do?

A.

Teens are at a stage in life when they are trying to develop their own identity, sense of self, and independence. Your son’s not wanting to talk about your cancer is a common reaction many teens have. Teens may feel that their questions or concerns might be hurtful or even scare the parent. It’s important for you to keep communicating with him and show him that it is okay to talk about feelings and ask questions. Ask him what he already knows or thinks about cancer and try to provide concise information that will clear up any misinformation he may have gotten from peers or the internet. Keep him up to date about your cancer and treatments, and let him know that if he has any questions or concerns he can always talk with you about them.

It’s important to respect his privacy and to offer him additional support that may be helpful to him. Identifying a relative like an aunt or uncle, or a teacher, coach, or school counselor with whom he can talk more openly can give him a sense of feeling more in control of his situation, and allow him to voice questions or concerns he may not want to with you.

If you haven’t done so already, I would also encourage you to inform his school. Teachers and school counselors can be supports for both your son and yourself. They can watch for and inform you of any concerns or behavioral changes your son may be displaying, and can advise you should they feel your son might need additional professional help.

CancerCare has been working to expand its support services to children and teens. We periodically offer a teen caregiver support group online. Teens Who Have a Loved One With Cancer Support Group allows teens who have a family member diagnosed with cancer to interact with each other and get support, and the group is facilitated by an oncology social worker.

The following publications may help as you navigate the sometimes tricky territory of having cancer while parenting a teen:

Q. I am seeking a support group for children under age 12 whose single mother is in stage 4 cancer. Please provide any available options.

A.

Our Connecticut office currently offers a support group Crafting Ways to Cope for Children Who Have a Parent With Cancer. This group is for children ages 5 to 12 who have a parent with cancer. The group is led by an oncology social worker and offers craft activities as a way to help children ask questions, express feelings and share concerns about their parents.

Otherwise, you probably want to check with the mother’s treatment center to see if they provide a children’s support group. You can also contact your local affiliate of Cancer Support Community in order to get more information about what type of children’s program they offer.

CancerCare provides a number of publications, including Helping Children Understand Cancer: Talking to Your Kids About Your Diagnosis that address helping children who have a family member with cancer. Communication is the number one priority, since even young children can often sense when something is wrong, and if no one explains what is happening, will often imagine something worse than it really is, or even blame themselves. How and how much is communicated depends on the child’s unique personality, but providing an ongoing chance for them to express themselves, asking questions and sharing their feelings, is helpful for children of all ages.

Finally, it’s important to let children know that even though some other things around the house are probably going to be different for a while, that the child’s parents/grandparents/family members love for them hasn’t changed a bit.

Q. I've recently started treatment and I'm trying to find things that can help support my 13-year-old such as groups, counseling, etc. Do you have recommendations?

A.

Children and teenagers experience a range of feelings after a loved one is diagnosed with cancer and it is common for parents to wonder how they can best support their children. While some teenagers may outwardly express their fears, questions and concerns, others may be less expressive. Let your son/daughter know that you are available to talk when he/she is ready. Encourage him/her to come to you with questions and that if you don’t know an answer you will work together to find it out.

Together with your son/daughter, identify the people he/she would feel comfortable turning to for support. For example, you, other family members, teacher, school social worker, religious advisor or family friend. It can be helpful to inform your child’s teacher and school social worker about your diagnosis so that they can provide additional support to your son/daughter at school.

In addition to individual support, teenagers can benefit from participating in a support group. Teenagers often feel isolated and alone as they cope with the cancer diagnosis of a loved one and support groups provide the opportunity for teenagers to meet others who know what it’s like to have a loved one with cancer. This gives them a safe space to express how they feel, give and get support from their peers and learn healthy coping skills.

The Cancer Support Community lists support centers in several states that provide support groups for children and teens. You may also want to speak with the social worker at your hospital or treatment center about local services available for children and teens.

The American Cancer Society may also provide a listing of support services available in your area. They can be reached at 1-800-227-2345.

There are several online resources for teens including Group Loop, Kids Konnected and Cancer Really Sucks.

To learn more about supporting a teen when a loved one has cancer, please read Helping Teenagers When a Parent Has Cancer. An additional resource you may find helpful is our Connect Education Workshop, Helping Children and Teens Understand When a Parent or Loved One Has Cancer.

CancerCare offers free telephone counseling and support to parents who have been diagnosed with cancer. To speak with an oncology social worker for more information about finding the right type of support for your child based on his/her unique needs, call our Hopeline at 800-813-HOPE (4673).

Q. I've been recently diagnosed and I'm not sure quite how to tell my kids. Is it ever a good idea to not tell them?

A.

Disclosing a cancer diagnosis to children is never easy. It is common for parents to wonder whether their children will be better off not knowing about their diagnosis. However, children sense when something is wrong and being honest with your children will help them feel secure and confident that they can trust you. It will also prevent them from coming up with even scarier possibilities.

When disclosing your diagnosis, choose a quiet time when your children are well rested. Prepare what you would like to say beforehand so that you feel comfortable with the language you choose to use. Many parents find it helpful to have this conversation with their spouse or another adult present.

When explaining cancer, use simple and age-appropriate language. Explain your treatment and prepare your children for the changes they can expect. Reassure them that they will continue to be cared for throughout your treatment. Encourage your children to ask questions. If you don’t know an answer to their question, be honest and let them know that you will try to find out.

For more information, please read CancerCare’s publication Helping Children Understand Cancer: Talking to Your Kids about Your Diagnosis.

You may also want to read a story together about cancer and its side effects. The American Cancer Society has several books that can be helpful when explaining cancer to children:

KidsCope has a free downloadable comic book called KemoShark that helps explain cancer and chemotherapy to children.

To speak with an oncology social worker for more information and guidance regarding supporting children affected by cancer, call 800-813-HOPE (4673).

Q. A teacher asked me (a school social worker) how to help an 8-year-old student with his/her own cancer diagnosis and loss of hair. Any advice?

A.

Children who are diagnosed with cancer face unique challenges and adjustments. Parents, teachers and other caretakers often struggle with how to explain cancer and its effects. When speaking with this child’s teacher, you may want to consider the following points.

Children understand simple and clear explanations best. Provide concrete, age-appropriate information when speaking to this student. Explain that there are special medications that they will need to take that will help stop the cancer from growing. These medications may also cause his/her hair to fall out. Some children will want to hear a more detailed scientific explanation while others will be satisfied with more general information. Reassure the child that hair loss is temporary and explore whether he/she would feel most comfortable wearing a hat, scarf or wig in the meantime.

It is common for children to feel an array of feelings when they begin losing their hair including anger, sadness, embarrassment and fear. Let this child know that it is safe to express those feelings to you and his/her teacher. Validate the way they feel and remind him/her that although it is upsetting to deal with these side effects, it means that the treatment is working hard to stop the cancer and make his/her body healthy again. You may also want to preemptively prepare this child for questions his/her classmates may ask and come up with ways the child will feel most comfortable responding. While some children would rather not discuss their diagnosis with classmates, others may be more open with regards to what they are going through. There is more than one right way for the child to interact with their classmates and understanding your student’s specific wishes can inform the way you and the child’s teacher help the child’s classmates support the child with cancer.

You may find the following books helpful when explaining cancer and its side effects:

  • Chemo, Craziness & Comfort by Nancy Keene is a book for children between the ages of 6-12 that provides clear explanations about cancer and treatment.
  • KidsCope has a free comic book called KemoShark that helps explain cancer and chemotherapy

The American Childhood Cancer Association provides books to families with a child with cancer free of charge. Educating the Child with Cancer: A Guide for Parents & Teachers edited by Ruth Hoffman is a book for parents and teachers that provides guidance regarding the impact of cancer on a child’s education. It is free for families and for the child’s teacher.

For more information, support or guidance, call us at 800-813-HOPE (4673) to speak with an oncology social worker.

Q. I have cancer and have been struggling to be a “normal” parent. My biggest challenge is disciplining my children because I feel guilty that I’m tired and not available as much to them. Is there any info out there about raising children while living with cancer?

A.

Your question is one that we often hear. Without a doubt, cancer can impact your home life, and this disruption may cause a change in your children’s behaviors. Children want consistency and actually like guidelines, but it may be harder to set boundaries when you are not feeling well due to your diagnosis or its treatment.

There are some things that you can do to reduce stress, and perhaps make things a little easier in your home:

  • Give hugs and say “I love you”: The primary need of children is safety and security. Let them know that they are loved and heard, and that in no way did your cancer impact your love for them.
  • Allow yourself “me time”: As a parent – with cancer or not – it is vital that you remember to take care of yourself. Self-care is rejuvenating; it fuels the system both physically and emotionally. It is also a good lesson to impart to your children.
  • Be on the same page: Explain to your children, in age-appropriate terminology, your cancer and what the treatment will be. Use the word “cancer.”
  • Be available: Let your kids ask questions, and give honest responses.
  • Explain your treatment and what the side effects might be ahead of time: Prepare your children for the “what ifs.” Hair loss, fatigue or nausea may be side effects of your treatment. Maybe they want to meet your oncologist, or see where your treatment will be. Seeing, touching and feeling can make things less scary.
  • How you act and react is most likely what your children model their behavior on: A parent who reacts to their cancer by shutting down, having life revolve around the diagnosis, and creating a home life ensconced in cancer may have young ones mimicking that behavior. A parent who acknowledges the cancer, addresses the possible limitations, yet continues to live, is building resilience in their children.
  • Let the school know: The more people on your children’s team, the better. Inform the principal, guidance counselors and teachers of your diagnosis.
  • It is okay to ask for help: Others want to help, and letting them do so is a gift you give them. Take friends up on their offers. Think about what might help you, and ask.
  • Draw a “circle of love”: Younger kids are visual. Sit down with them and help them draw a picture of all the people who love them. Let them know that if you aren’t here for them, all these other people will make sure that they are “okay.”
  • Journaling: Older kids may have questions for you that they are uncomfortable asking. Give them a book they can jot their questions in and leave by the side of your bed. This will allow you to open up a meaningful discussion.
  • Schedule in some fun: Cancer is part of your life, but don’t allow it to be your family’s whole life. Watch a funny movie, dance and sing in the kitchen, work on crafts. Continue to grow, learn and explore as a family.

The most important thing to remember is that while you may have cancer, your children are so happy to have you there. As a parent, you are a symbol of safety and security, and just having you nearby can bolster your children’s sense of comfort.

Two good books that might be helpful to read for more information include:

  • Raising an Emotionally Healthy Child When a Parent Is Sick by Paula Rauch, M.D. and Anna Muriel, M.D.
  • When a Parent Has Cancer: A Guide to Caring for Your Children by Wendy S. Harpham.

Q. This is a hard time of year for us as my wife has cancer. Would you recommend any books about talking to and doing the best for our kids?

A.

When coping with a cancer diagnosis, families often experience a variety of changes and adjustments during the holidays and other significant events. Discussing and preparing for these changes with your children can open up dialogue, elicit questions and help you to understand what your child is feeling. Although certain rituals or customs may change, it can also be helpful to honor old traditions as a way of maintaining a sense of normalcy for your children. Remember that cancer doesn’t have to be the focus of the holidays, and you have discretion over how much room cancer gets during your celebration.

Books can be helpful tools or supplements to reinforce language and ideas to help children cope with a parent’s cancer diagnosis, but should not replace a conversation. The holidays may be an opportunity to have such discussions, as you are likely joining together as a family to reflect on the past year and to make plans for the year ahead.

When selecting literature to help you talk to your children, consider your child’s age, developmental stage and maturity level. Being honest allows children of any age an important opportunity to ask questions and express how they feel. You may not have all the answers, but you can remind your child that you will always be available for them to ask.

For more information about coping with the holidays and communicating with children about cancer, read CancerCare’s Coping with Cancer During the Holidays and Helping Children When a Family Member Has Cancer, or review the following books to help you navigate these conversations:

  • How to Help Children Through a Parent’s Serious Illness by Kathleen McCue and Ron Bonn (St. Martin’s Press: 1994)
  • Helping your Children Cope with your Cancer by Peter Vandernoot (Hatherleigh Press: 2006)
  • When a Parent Has Cancer : A Guide to Caring for Your Children by Wendy Schlessel Harpham, MD (Harper Collins: 2004)

Q. My 5-year-old nephew has lost an eye due to retinoblastoma. He has started asking questions we do not know how to answer (e.g., What does cancer look like? Was I born with it?). How do we answer these questions and ease his anxieties?

A.

When talking to children about a cancer diagnosis, it’s important to provide honest, age-appropriate answers. For instance, when the child asks if they were born with cancer, you can tell them that the cancer happened on its own—nobody did anything to make it happen. There may also be questions that you may not know the answers to and it’s okay to simply say “I don’t know,” which is an honest answer.

The reason why we stress being honest when talking with a child about cancer is that by doing so, you’re letting the child know that you can be trusted. For more information about talking to children and helping them cope with cancer please read our booklet, Helping Children When a Family Member Has Cancer.

Children may not have a clear understanding of what cancer is, which is why we recommend using arts, crafts, toys, and games to assist in talking about cancer. For example, you can take a small piece of clay and place it on a doll to show where the cancer is located. One might also draw a picture of a person to show the child where the cancer is located on the drawing.

It can be helpful to read books which are specifically written to help children understand cancer and its treatment. Kemo Shark is a downloadable comic book that is designed to help kids understand cancer and chemotherapy.

At times, counseling may be useful to assist children in working through the feelings behind their questions. If you think this might be helpful for your nephew, CancerCare’s professional oncology social workers can help you find local children’s counseling services. Please call us at 1-800-813-HOPE (4673).

Q. Are there books written specifically for children that can help them understand and cope with a parent's cancer diagnosis?

A.

After talking to your child about a cancer diagnosis, books can be a helpful follow-up to encourage learning more about cancer, exploring feelings and asking questions. It can also be a nice opportunity to spend quiet time together or give your child some autonomy to learn independently. Books are available for different age groups and developmental stages. It is important to choose books that are appropriate for your child by not only looking at the recommended age on the book, but also by looking through the book in its entirety.

The American Cancer Society offers:

Kids Konnected has great resources for children and teens, including Moxie, a story about friends helping each other when a parent or family member has cancer

KidsCope has a free comic book called Kemo Shark to help kids understand cancer and chemotherapy.

The National Cancer Institute has excellent free booklets to help teens cope with cancer:

If you choose to share books with your child about cancer, be sure to check in with them to see if they have questions about what they read or if they want to talk about it.

Q. My daughter is having separation anxiety now that she knows about my cancer. She also wakes me up every night saying she is scared. She won't go to sleep without me. Any suggestions?

A.

Children who have a parent with cancer often experience separation anxiety. They may be reluctant to go to school or to a friend’s house, or they may be afraid when a parent has to leave them to go to the doctor or even on an errand. Because fear is often driven by the unknown, it is important to make sure your children know about your cancer and how you will be cared for to give them as much peace of mind as possible. In addition, when you leave the house to go somewhere, tell your children where you are going and when you expect to return. Leave a contact number where they can reach you in case of emergency. By including your children in your cancer experience and daily routine, they have some control and participation, and may feel less helpless.

It’s common for children’s fears to come out at bedtime. They may feel more emotional because they are tired, or the natural separation of going into their own bedroom may trigger anxiety. If you haven’t already, set up a bedtime routine for your daughter that is comforting, such as listening to music, reading a story, or talking. Spending peaceful time with her before she falls asleep will help her relax and feel safe. It is also important for children developmentally to learn to self-soothe. Teach her techniques she can try should she wake up during the night, such as reading to herself or listening to a recorded story in your voice. Reinforce that you are safe in bed nearby. Establishing routines and communicating with her about your cancer should help alleviate some of her fears.

For more information about communicating with children about a cancer diagnosis, read CancerCare’s Helping Children When a Family Member Has Cancer. The American Cancer Society also has a helpful guide, Helping Children When A Family Member Has Cancer.

You might also want to seek counseling for your daughter so that she can express and work through her fears. Our staff of professional oncology social workers are knowledgeable in children’s issues related to a parent’s diagnosis, sibling or other loved one. To speak with a social worker, call us at 1-800-813-HOPE (4673) or email info@cancercare.org.

Q. My 7-year-old daughter is sure she did something to cause my cancer. What can I say to her to convince her otherwise?

A.

It’s normal and expected for children to fear they have somehow caused a parent’s cancer. When children don’t understand something they sometimes use “magical thinking” —the belief that one can bring about an event by thinking about it or wishing for it. By continuing to think she caused your cancer, your daughter is likely telling you she loves you, is afraid, and has no other explanation other than she must have done something to cause it.

You have already taken the first step to help your daughter, which is to take her concerns seriously. The next step is to plan a talk with her addressing her feelings and providing accurate information. Simply telling your daughter that she didn’t cause your cancer is not enough—you need to give her an explanation that she can understand.

Pick a quiet time when you and your daughter will not be rushed or interrupted, and sit next to her or hold her hand so she feels safe. It is important to praise your daughter for talking to you about her thoughts and feelings and encourage her to continue. You can also let her know that many children worry that they caused their parent’s cancer, but it’s not actually possible. Our booklet, Helping Children When a Family Member Has Cancer, offers suggestions on what you might say to your child including:

“Mommy (or daddy) is sick with an illness called cancer. The cancer happened on its own—nobody did anything to make it happen. I have very good doctors, and I am going to do everything possible to get better.”

Your daughter may accept this explanation, or may want more concrete information. Depending on her level of maturity and interest, you may use books or the internet to help her learn more about your cancer. Make sure to preview any materials or websites before sharing them with her and allow her to continue to share her feelings.