Questions to Ask About Childhood Leukemia

It’s important to have open, honest discussions with your child’s cancer care team. They want to answer all of your questions, no matter how small they might seem. For instance, consider these examples:

If leukemia has just been diagnosed

• What type of leukemia does my child have?
• How will the subtype of the leukemia or any other factors affect my child’s prognosis?
• Do we need other tests before we can decide on treatment?
• Will we need to see other doctors?
• How much experience do you have treating this type of leukemia?
• Who else will be on the treatment team, and what do they do?

When deciding on a treatment plan

• What are our treatment choices?
• What do you recommend and why?
• Should we get a second opinion? How would we do that? Can you recommend a doctor or cancer center?
• Should we consider a stem cell transplant? When?
• Are there any clinical trials we should consider?
• How soon do we need to start treatment?
• What should we do to be ready for treatment?
• How long will treatment last? What will it be like?
• How much of the treatment will need to be done in the hospital?
• How will treatment affect our daily lives (school, work, etc.)?
• What are the risks and side effects of the treatments you recommend?
• Which side effects start shortly after treatment, and which ones might develop later on?
• Will treatment affect my child’s ability to learn, grow, and develop?
• Will treatment affect my child’s future ability to have children?
• What are the chances of curing the leukemia?

During and after treatment

Once treatment begins, you’ll need to know what to expect and what to look for. Not all of these questions may apply, but getting answers to the ones that do may be helpful.

• What type of follow-up will we need after treatment?
• How will we know if the treatment is working?
• Is there anything we can do to help manage side effects?
• What symptoms or side effects should we tell you about right away?
• How can we reach you or someone on your team on nights, weekends, or holidays?
• Who can we talk to if we have questions about costs, insurance coverage, or social support?
• What will our options be if the treatment doesn’t work or if the leukemia comes back?
• Do you know of any support groups where we can talk to other families who have been through this?

Along with these sample questions, be sure to write down your own. For instance, you might want to ask about possible long-term risks of cancer or other health problems.

Also keep in mind that doctors are not the only ones who can give you information. Other health care professionals, such as nurses and social workers, may have the answers to some of your questions. You can find out more about speaking with your health care team in The Doctor-Patient Relationship.