Your child’s doctor and the treatment team will give you a lot of details about the type of cancer and possible treatments. Ask your doctor to explain the treatment choices to you. It is important for you to become a partner with your treatment team in fighting your child’s cancer. One way for you to be actively involved is by asking questions. You may find it hard to concentrate on what the doctor says, remember everything you want to ask, or remember the answers to your questions. Here are some tips for talking with your doctor about childhood cancer:
- Write your questions in a notebook and take it to the appointment with you. Record the answers to your questions and other important information.
- Tape record your conversations with your child’s health care providers.
- Ask a friend or relative to come with you to the appointment. The friend or relative can help you ask questions and remember the answers.
Make sure you know the answers to these questions:
About the Diagnosis
- What kind of cancer does my child have?
- What is the stage, or extent, of the disease?
- Will any more tests be needed? Will they be painful? How often will they be done?
- What is the cause of “x” and are there any genetic associations (i.e. implications for siblings and future children)?
- What could they have done differently to prevent “X”?
About Treatment Choices
- What are the treatment choices? Which do you recommend for my child? Why?
- Would a clinical trial be right for my child? Why?
- Have you treated other children with this type of cancer? How many?
- What are the chances that the treatment will work?
- Where is the best place for my child to receive treatment? Are there specialists – such as surgeons, radiologists, nurses, anesthesiologists, and others – trained in pediatrics? Can my child have some or all of the treatment in our home town?
- What is the difference between standard of care treatment and participation on a clinical trial?
About the Treatment
- How long will the treatment last?
- What will be the treatment schedule?
- Whom should we ask about the details of financial matters?
- Will the treatment disrupt my child’s school schedule?
- When is it ok to use alternative medications or treatments?
About Side Effects
- What possible side effects of the treatment can occur, both right away and later?
- What can be done to help if side effects occur?
About the Treatment Location
- How long will my child be in the hospital?
- Can any treatment be done at home? Will we need any special equipment?
- Does the hospital have a place where I can stay overnight during my child’s treatment?
About School and Other Activities
- Is there a child-life worker specialist (a professional who is responsible for making the hospital and treatment experience less scary for the child) to plan play therapy, schoolwork, and other activities?
- When can my child go back to school?
- Are there certain diseases my child cannot be around? Should I have my child and his or her siblings immunized against any diseases?
- Will my child need tutoring?
- What does treatment mean as far as scheduling work and clinic appointments for the parents and/or caretakers?
- Is information available to give to the school system about my child’s needs as he or she receives treatment?
- What are the support networks available for the family, patient and siblings?
National Institute of Health. Types of Cancers 2011. Retrieved September 13, 2011 from http://www.cancer.gov/cancertopics/coping/youngpeople/page3