Questions to Ask Your Child’s Health Care Team About Non-Hodgkin Lymphoma

It is important to have open, honest discussions with your child’s cancer care team. Ask any question, no matter how minor it might seem. For instance, consider asking these questions:

When you're told your child has non-Hodgkin lymphoma

• What type of non-Hodgkin lymphoma does my child have?
• What is the stage (extent) of the lymphoma, and what does that mean?
• What tests need to be done before we can decide on treatment?
• Do we need to see any other types of doctors?

When deciding on a treatment plan

• How much experience do you have treating this type of lymphoma?
• What are our treatment options?
• What treatment do you recommend and why?
• Should we get a second opinion before starting treatment? If so, can you suggest a doctor or cancer center?
• How soon do we need to start treatment?
• What should we do to be ready for treatment?
• Who else will be on the treatment team, and what do they do?
• How long will treatment last? What will it be like? Where will it be done?
• How much of the treatment will need to be done in the hospital?
• How will treatment affect our daily lives?
• What are the risks and side effects of treatment?
• 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?
• What are the chances of curing the lymphoma?
• What will our options be if the treatment doesn’t work or if the lymphoma comes back?

You should also talk with your child’s doctor before treatment to find out about the possible long-term side effects. For example, you might want to ask about how treatment could affect your child’s fertility later on. Here are some questions you might want to ask about the risks of infertility with treatment:

• Will this treatment affect my child’s ability to have children someday?
• Can anything be done to prevent or lower the risk of infertility? Would this interfere with my child’s cancer treatment?
• Should we talk to a fertility specialist?
• Once my child finishes treatment, how will we know if they might have fertility problems?

During 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 could be helpful.

• 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?
• Are there any limits on what my child can do during treatment? 

After treatment

• What type of follow-up will my child need after treatment?
• Are there any limits on what they can do after treatment?
• What symptoms should we watch for?
• How will we know if the lymphoma has come back? What will our options be if that happens?
• Do you know of any local or online support groups where we can talk to other families who are coping with childhood lymphoma?

Along with these examples, be sure to ask any other questions you might have. For instance, you might want more information about recovery times so that you can plan work and school schedules. Or you might want to know more about clinical trials.

Keep in mind that doctors aren’t the only ones who can give you information. Other health care professionals, such as nurses and social workers, can answer some of your questions. To find out more about communicating with your health care team, see The Doctor-Patient Relationship.