Coping With the Diagnosis of Cancer
Some practical things that you can do to help during this time include the following:
- Learn as much as possible about your disease. At times, ignorance or a lack of understanding is your worst enemy. Arm yourself with information in order to lessen frustration. Do not hesitate to ask questions about your disease. You may wish to keep a notebook with all of the medical records and information about your diagnosis; sometimes, you can be too numb or too upset at the hospital and realize later that you forgot everything the physician had said.
- Keep a journal of your feelings about your disease and the impact on your life. As time goes on, you may be able to look back and see that things are improving.
- Learn about your health benefits so that you understand what expenses will be covered by insurance.
- Continue doing your usual, daily activities. You will still have grocery shopping, laundry, and going through the mail to do on a daily or weekly basis. Having some of these "regular" activities will help you cope and feel more in control.
- Take care of your family relationships. Although your primary focus is on your cancer, it is important to also spend time as you normally would with your family, friends, and spouse. It is healthy to have fun together. Relieving stress and strengthening family relationships will allow you to cope better with your disease.
- Utilize the support groups in the area, as well as national support groups and their resources. Find out about supportive services available at the hospital to help you cope, such as the availability of social workers and/or meeting with other families. Do not be afraid to ask for help. Each family's need for support is unique. Friends and family members will often ask, "Is there anything I can do to help?" Consider saying "yes" to this question and ask them to pick up your groceries, help with the laundry or housecleaning, pick up your children from their extracurricular activities, or make dinner. "Assigning" a friend or family member something to do to help you will also help them feel like they are contributing.
- Avoid emotionally draining situations. Sometimes, well-meaning friends and family members will say the worst possible thing at the time of a cancer diagnosis. They truly want to help or be supportive, but sometimes do not know how to respond. Their words may hurt you or disappoint you, even though that was not their intention. You must realize that people will not know what your needs are unless you tell them. Sometimes, it is simply easier to be forthright and tell someone "I would just like you to sit quietly with me and keep me company" or "I need to spend some time alone right now." Do not be afraid to express your needs during this time.
Other people may want to talk to you about their experiences with cancer. They may believe that they are being helpful to you, but instead may be making your situation feel even more overwhelming. It is important for you to avoid these discussions if they are not helping you. It is healthy to be "selfish" and ask for what you need, as well as what you do not need during this time.
- Share what you have learned. You will have important knowledge and skills that you learn as you experience your illness. You could help others and their families by sharing your experiences in a support group or other setting.
Helping Children and Youth Cope With Cancer
The following is a list of suggestions for patients, parents, and siblings that may help each individual cope with his/her emotions, depending upon the age of the child with cancer and the age of the siblings:
Infants and very young children (birth to 3 years of age):
- for patients
- holding
- touching
- rocking
- soft music
- hugging
- cuddling
- distracting with toys or colorful objects
- creating a cheerful, hospital room
- having siblings visit
- keeping their regular schedule for sleeping and feeding
- for siblings
- providing cuddling
- hugging frequently
- arranging visits to ill brother or sister
- keeping them near parents, if possible
- using relatives, friends, or a daycare center to maintain their usual daily routine
- having one parent spend time with them daily
- recording lullabies, stories, messages when parent cannot be at home
- offering frequent reassurance to toddlers that mommy or daddy will soon be back
Toddlers, pre-school (3 to 5 years of age):
- for patients
- giving very simple and repeated explanations for what is happening
- providing comfort when child is upset or fearful
- checking on child's understanding of what is happening
- offering choices when possible
- teaching acceptable expression of angry feelings
- maintaining a normal daily schedule for feeding and sleeping
- giving simple explanation for parent's distress, sadness, or crying
- for siblings
- giving a simple explanation that brother or sister is sick and that people are helping
- offering comfort and reassurance about parent's absence
- arranging for reliable daily care and maintenance of usual routines
- having one parent see child daily, if possible
- remaining alert to changes in behavior
- reassuring child about parent's distress or sadness
School-aged children (6 to 12 years of age):
- for patients
- offering repeated reassurance to your child that he/she is not responsible for the cancer
- teaching that sadness, anger, and guilt are normal feelings
- allowing your child to keep feelings private, if that is preferred
- suggesting personal recording of thoughts, feelings through writing, drawing
- arranging for physical activity, when possible
- providing explanations your child can understand about diagnosis and treatment plan; including your child, when appropriate, in discussions about diagnosis and treatment
- answering all questions honestly and in understandable language, including, "Am I going to die?" (talk with cancer care team about how to answer)
- listening for unasked questions
- facilitating communication with siblings, friends, and classmates, if desired
- arranging contact with other patients to see how they have dealt with diagnosis
- offering repeated reassurance to your child that he/she is not responsible for the cancer
- for siblings
- teaching about normal feelings of fear, anxiety, sadness, or anger
- encouraging sibling to communicate feelings; suggesting sibling write, telephone, send drawings or taped message to patient
- providing understandable information about diagnosis and treatment
- answering all questions honestly, including, "Will he/she die?"
- listening for unasked questions, especially about personal health
- offering repeated reassurance that sibling is not responsible for causing the cancer
- informing teachers and coaches of family situation
- arranging for school and other activities to continue on schedule
- supporting sibling's having fun, despite brother or sister's illness
- planning for daily availability of one parent
- explaining that parents' distress, sadness, or crying is okay
- teaching about normal feelings of fear, anxiety, sadness, or anger
Adolescents (13 to 18 years of age and older):
- for patients
- giving information on normal emotional reactions to a cancer diagnosis
- encouraging expression of feelings to someone: parents, family, or staff
- tolerating any reluctance to communicate thoughts and feelings
- encouraging journal keeping
- providing repeated reassurance that they are not responsible for causing the cancer
- being included in all discussions with parents about diagnosis and treatment planning
- being encouraged to ask questions (parents should listen for unasked questions)
- addressing spiritual concerns about "Why me?"
- permitting private time for interaction with team professionals
- offering assurance that parents and family members will be able to manage crisis
- encouraging sharing news of diagnosis with peers, and classmates
- arranging for visits of siblings and friends
- facilitating contact with other adolescent patients, if desired
- for siblings
- involving adolescent in events around diagnosis
- reassuring that cancer is not contagious
- offering assurance that nothing they did or said caused the cancer
- providing detailed information on diagnosis and treatment plan
- answering all questions honestly
- arranging access to treatment team, if desired
- discussing spiritual issues related to diagnosis
- encouraging expression of feelings
- arranging for management of daily life at home
- providing assurance that family will be able to handle crisis
- informing teachers and coaches of family situation
- encouraging usual involvement in school and other activities
- asking relative or friend to take a special interest in each adolescent sibling
Cancer in the Family - Talking to Kids about Cancer
Few things impact a family more than a diagnosis of cancer. Every member of the family and every aspect of your life will be affected such as relationships, money, time and energy. Parents diagnosed with cancer must not only face their own fears and uncertainty, they must also help their children cope with this life-altering reality.
Communication is key throughout the cancer journey. Understanding children’s developmental stages can help parents understand the way their child views illness. You should also take into account the individual child’s temperament. It is important to remember that children are more resilient than you might anticipate.
This Web site aims to give you the tools you need to help your children cope with your cancer.
Through a Child’s Eyes: Understanding Serious Illness by Age
Infants – under 2 ½
1. Developmental stage/Level of understanding
- Self-focused.
- Beginning to see themselves as separate from their parent. Separation anxiety is an issue.
- Life is lived in the present. They have a minimal understanding of time.
- Peek-a-boo is popular, but everything is expected to come back, just the same as before.
- They understand being hurt, but not the concept of illness
- When a parent is indisposed or absent, they may cry and act out, hoping that will make things return to normal. When that doesn’t happen, they may become withdrawn and sad, their eating patterns may change and they may cling to the parent present.
2. Helping them cope
- Keep to normal routine, as much as possible. Familiar surroundings and consistency mean security.
- Avoid exposing your child to many different people.
- Any changes in routine should be explained to the child in terms of how it will affect them. This explanation should come prior to the change if possible. For example, “Mommy feels bad today and needs to take a nap, so she can’t play with you right now.”
- Give them lots of love and attention. Don’t stop, even if they seem inconsolable. Hugs are wonderfully reassuring to them.
- Reassure them that they are healthy themselves and that it is not their fault that their parent is sick.
Toddlers – under 5
1. Developmental stage/Level of understanding
- Toddlers are self-centered.
- They think simply and concretely.
- They can not yet conceive of the future, but they do understand yesterday and today.
- They are quite attached to their primary caretakers and concerned about separation.
- Feelings are more important than facts.
- The terms “hurt” and “sick” are understood to be short term conditions caused by a defined action. “Getting better” is assumed to happen either automatically or by doing what the doctor says.
- They express anger and fear through behavior, sometimes through regression. They may cling to an adult more or have nightmares or lose potty training.
2. Helping them cope
- Toddlers need lots of hugs when there is cancer in the family. They need extra love and attention and reassurance that they will be cared for.
- Matter-of-fact and brief answers to questions are important. Your feelings should be shared in a simplified manner. For example, “I miss Daddy,” or “I hurt inside.”
- Use a normal voice and maintain composure to reassure a toddler.
- Encourage physical activity, drawing, and music to help the child express their own emotions. Allow the child to do what interests them, separate from the patient.
- If the parent is hospitalized, it helps to keep a few of the child’s toys and books at the hospital.
- Reassure them that they are healthy themselves and that it is not their fault that their parent is sick.
School Age – 5 to 8
1. Developmental stage/Level of understanding
- Early school age children are self-centered, dependent on their parents and focused on family life and routine.
- They are beginning to want to be like their friends and participate in activities outside the family.
- These children are aware of right and wrong and are starting to think logically.
- They understand past, present and near future. The distant future is still difficult to comprehend.
- They are starting to understand how the body works, along with it the meaning of serious illness and the way treatment helps people get better.
- Most have heard of cancer but may equate the diagnosis with death.
- They are able to express their feelings, yet may be overwhelmed by their depth.
- They may ask a lot of questions. In fact, they may want to know more about the details of the illness than they do about what it means to have a parent that is sick.
- Children often have heard more information than parents realize.
- These children will quickly return to play when they have heard enough. They want to stay as normal as possible.
2. Helping them cope
- Early school age children need gentle honesty. If they don’t receive clear explanations about what is happening with their parent’s illness or treatment, they will make sense of it by using their imagination and incorrect information.
- Ask children frequently if they have any questions. They need lots of opportunity to talk but they may choose to simply be together. If kids aren’t ready to talk, that’s ok. Parents should be prepared for this response. The parent needs to be approachable and available to the child.
- Ask the child to explain back to you what is happening to the parent that is sick. This will help you know what they comprehend and help you correct any misconceptions the child may have.
- Reassure the child that he/she will be cared for and that it is normal to feel angry or afraid.
- Show your feelings to encourage them to share theirs. A sad movie, story or song can encourage a reluctant child to release their feelings.
- Unless the child asks for more, keep hospital visits brief.
- Reassure them that they are healthy themselves and that it is not their fault that their parent is sick.
Preteen - 9 to 12
1. Developmental stage/Level of understanding
- Pre-teens are beginning to focus more on friends than family.
- They absorb new information quickly and want to know how things work.
- They think logically most of the time and are beginning to develop abstract reasoning.
- They are conscious of what is socially acceptable and want to be part of the norm.
- The meaning of illness at this age revolves around how visible symptoms impact them socially.
- These children know what cancer is and that there are different kinds of cancer.
- They may worry that they are ill themselves.
- These children may want to spend more time with the parent who is not ill.
2. Helping them cope
- Preteens are trying to be grown-up. They are more independent than younger children and can maintain normal activities better.
- Preteens may try to hide their feelings to avoid being “childish.”
- They might hide negative feelings from their peers but take them out on family members. Make sure they understand they are safe lashing out at family members.
- Encourage your child to be involved with friends and outside activities.
- They can assume additional responsibilities but they shouldn’t be overloaded.
- Don’t let the child assume the role of either parent.
- Preteens might seem selfish about the way the illness affects them. Try to be patient with them. Instead of punishing the child, talk with them.
- Show them affection. Model ways for them to deal with feelings and worries.
- Preteens want specific information about prognosis and treatment. Answer their questions and promise them more information as it becomes available.
- Many children will use the internet to get further information. This can be scary if the information is negative or too technical. Be aware of where they are gathering their information.
- Reassure them that they are healthy themselves and that it is not their fault that their parent is sick. Offer to talk to their friends and their friends’ parents to explain what is happening.
- Keep appropriate people at your child’s school informed about your situation. They can help you with any behavior changes that occur.
Teen – 13-18
1. Developmental stage/Level of understanding
- Teens want to be self-reliant.
- Friends are the primary sources of advice and companionship but they still need the security and love of parents.
- Teens are self-centered and think a lot about their future.
- They can be moody and self-conscious, particularly about their bodies.
- They understand the significance of cancer and other serious illnesses. They understand symptoms, the reasons for the symptoms and the possibility of death.
- Teens may be conflicted about being both independent and close to their sick parent.
- Because they have some empathy for others’ feelings, they are concerned with their parent’s pain and suffering.
- They worry about their parent’s future but are often afraid to let their feelings show.
2. Helping them cope
- Because people outside the family are so important to them, teens usually cope better than younger children with a seriously ill parent.
- Be aware that teens are feeling torn between a desire to be with their friends and with their sick parent.
- Encourage them to keep up with as many normal social activities as possible.
- Friends are an important source of support for teens.
- Avoid making your teen assume adult roles but involve them in some decision-making activities, too.
- Reassure them that they are healthy themselves and that it is not their fault that their parent is sick. Offer to talk to their friends and their friends’ parents to explain what is happening.
Summary
- Maintain your child’s routine – sleeping, eating, school and recreation-as much as possible.
- Show interest in your child’s life. Pay attention to the small stuff. This makes home feel secure and the child feel important.
- Be honest with your child. Keep your promises and maintain your child’s trust. When your child stops believing in what you say, they will try to read between the lines and become even more fearful.
- Keep talking. Encourage questions and discussion. Try to understand why your child is asking a particular question. Take your time in answering – it doesn’t have to be immediate – it’s OK to tell the child you don’t know or need to think about the answer.
- Make family time a priority. Limit outside intrusion like phone calls and visitors. Avoid constant talk of cancer.
- Keep the child informed. Hearing information second-hand confuses a child and leaves them feeling undervalued. It is important that they trust you to give them information.
- Ask your children to share what they hear about cancer so that you can correct misinformation to reduce their worry and feeling of isolation.
- Keep the school informed. The teacher should be alert to any changes in the child’s behavior and let the child decide how private they want your cancer to be. Ask the teacher to let you know if the child expresses any worries about you or demonstrates any changes in school performance.
- Prepare for hospital visits. The child should know what to expect, especially what their parent will look like. Describe what they will see in the room. The adult accompanying them should be willing to leave when the child is ready. Then discuss the visit-talk about what was comfortable, what was difficult, and how the child is feeling.
- Seek professional support if the child asks to talk to someone outside the family. Help may be needed if your child is anxious or depressed. Signs include a lack of interest in favorite activities or friends, change in school performance, sleep or appetite disturbances and risk-taking behavior, such as substance abuse or feelings that life is not worth living.
Sources
When a Parent is Sick: helping parents to explain serious illness to Children, by Joan Hamilton, R.N. Pottersfield Press. 2001.
Facing Cancer: a complete guide for people with cancer, their Families and caregivers, by Theodore A stern, M.D. and Mikael Sekeres, M.D., M.S. McGraw-Hill. 2004
Frequently Asked Questions
1. Should I tell my child about my cancer? When should I tell them?
A diagnosis of cancer affects the entire family. While it may be difficult to tell children that you are ill and will be receiving treatment, be aware that children are observant and will sense that something has changed. It is important to explain what is happening in a way that they can understand. Talking to them as soon as possible is the best option; however, taking some time to plan what you are going to say and prepare for questions the children might have is a good idea.
If you are feeling too overwhelmed and/or too emotional, it is a good idea to wait until you feel stronger before telling your children. It is often helpful to have another trusted adult with you when telling your children. Remember, children often have fears that are worse than reality. Talking to them as soon as you can opens the doors for honest and supportive communication that will help you both throughout the cancer experience.
2. What do I tell my children?
Soon after diagnosis, you may not have all the information about your treatment options. Yet it is important to tell your children about your situation. You can say something like, “cancer is a serious, but treatable disease.” As far as treatment, children should be told that the doctors are working to make you better. They should also know what will happen in the next few days or weeks and also about how long treatment will take.
3. Do I use the word “cancer”?
Using the work “cancer” will help you be more open and honest with your children. It will demystify the term, so it will be less upsetting to them when they hear others use it. By talking about “cancer,” you can begin to help them to understand your situation, as well as clear up any pre-existing misinformation or fears they may have. (In most cases it’s helpful to use the word “cancer”; however, there may be reasons you may choose not to use it. Be aware they may over hear this word from others).
4. Do I talk about the possibility of my dying?
You may be worried about dying and so might your children. In general, if your physician is optimistic about your chances for recovery, you do not need to tell your children you could die. Be honest and encourage your children to share their fears and worries with you. Your children may ask you if you could die. Carefully consider your response. Balance honesty with the emotional impact of such news and leave the door open for future questions. Take into account the child’s developmental age and understanding of time when answering this question.
5. What if they ask questions I have already answered?
Asking the same question repeatedly is normal for children. Absorbing the reality of a cancer diagnosis is difficult for everyone. Forgetting information is common for both children and adults in times of great stress. Do not feel like a failure if it seems your children do not understand your explanations. By answering your children’s questions over and over again, you are helping to ease their worries. Sometimes children may test you to see if your answers stay the same. Try a different approach to answer your child’s questions each time they ask.
6. Should I tell others about my cancer? Teachers? Friends?
People vary in the length of time it takes to feel comfortable talking about cancer. It can be a strain for children to feel as if they need to keep your cancer secret. Chances are the news will leak out anyway. Consider who the important people in your child’s life are. Often it is their teachers, coaches, scout leaders, music instructors and the parent’s of their friends. Sharing the news with these people allows them to interact with your children in helpful ways. It will help teachers make sense of any behavior changes.
It is a good idea to stay in close touch with your child’s teachers throughout your illness. Telling the parents of your children’s friends can be a blessing. They can help your child to maintain their normal routines and activities and be a wonderful source of support for you. Many of them will want to help by dong things such as providing transportation, child care and meals.
7. Where can I turn for help?
- Counseling
- Support groups (social workers can be utilized to explore options including but not limited to support groups)
Books – (in the Health Library)
For Parents
For more local resources discuss this with your oncology health care professions; i.e. physician, nurse, nurse practitioner, social worker, dietician, pharmacist, chaplain, etc.
Hamilton, J. "When a Parent is Sick: helping parents explain serious illness to children" (Pottersfiled Press: 2001)
Harpham, W.S. "When a Parent has Cancer: a guide to caring for your children" (Perennial Currents: 2004)
Heiney, S. , et al. "Cancer in the Family: helping children cope with a parent’s illness" (American Cancer Society: 2001)
Russell, N. "Can I Still Kiss You? Answering your children’s questions about cancer" (Health Communications: 2001)
Stern, T. and Sekeres, M. "Facing Cancer: a complete guide for people with cancer, their families and caregivers"
Van Dernoot, P. "Helping Children Cope with your Cancer: a guide for parents and families" (Hatherleigh Press: 2002)
For Children
Martin, C. "The Rainbow Feelings of Cancer: a book for children
who have a loved one with cancer" (Hohm Press: 2001)
Harpham, W.S. "Becky and the Worry Cup" (Harper Collins: 1997)
Parkinson, Carolyn My Mommy Has Cancer
Yaffe, Risa Once Upon a Hopeful Night
Heegaard, Marge When Someone Has A Very Serious Illness (workbook)
Harpham,WS and Numeroff, Laura Kids Talk: Kids Speak Out About Breast Cancer
Schmidt, Rebecca Coloring Books: My Book About Cancer ( Father with Cancer or Mother with Cancer)
Heiney, Sue et al Quest A Journal for the Teenager Whose Parent has Cancer
Videos
Kids Tell Kids: what it’s like when a family member has cancer (Cancervive:1998)
Talking About your Cancer: a parent’s guide to helping children cope (Fox Chase Cancer Center: 1996)
We Can Cope: when a parent has cancer, Parent, Teen and Child versions, (Inflexxion:2002)
EBooks
Baider, L.; Cooper, C.; Kaplan-DeNour, A. "Cancer and the Family" (John Wiley and Sons, Ltd.: 2000)
Web sites
For BMT
https://bmt.stanford.edu
BMT guidebook under section 4 - Web sites at end of section – can be very general
NCI
Cancer Care
Institute for Health
Institute of Medicine
The various members of the cancer team can assist you and your family, as needed.
Trial Administration