Questions to Ask When Making Treatment Decisions For and With Your Child

After you have heard, “your child has cancer,” there will be many questions going through your head. This tip sheet can help you get organized and ask important questions about your child’s treatment options and plan. Not every question will apply to you, and you may not want to know the answers to all of them on your first visit. They are meant to be food for thought when making a list of questions to ask your doctor, either at the initial visit or further along in treatment.

General Tips for Appointments

• Get a notebook to write your questions down ahead of time so you don’t forget them at the appointment.
• Take your spouse/partner, another family member, or friend to appointments to provide support, as well as to take notes and help you remember what was said once you get home.
• It may be helpful to have another family member present to spend time with your child while you focus on the meeting with the medical team.
• Visits can be packed with information and often feel overwhelming. Ask your healthcare provider to write things down for you.
• Be careful of doing too much research on the internet. Make sure your sources are credible. Learn more about safe internet use here.
• Do you want your child to be part of the conversations with the healthcare team? Think about their age, developmental stage, and their ability to understand/ask questions. Your social worker, child life specialist, or psychologist can help you to assess your child’s abilities to participate in decision-making and treatment planning, as well as help you strategize and plan for talking with your child about their treatment plan. You can also talk with the medical team before the medical conversation begins about how you would like information to be presented to your child.

Surgery

• Why does my child need to have this procedure?
• Will this surgery cure my child’s cancer or is it only part of the treatment plan?
• What kind of surgery do you recommend for my child?
• What are the risks and side effects of this surgery?
• What are the risks if I decide I don’t want my child to have this surgery?
• What are my child’s options for anesthesia?
• What are the risks of anesthesia?
• What kind of incision or scar will my child have?
• Will my child have a lymph node dissection? If so, how many nodes will be removed?
• How will my child feel after surgery? Will my child need pain medication?
• What kind of care will my child’s incision need at home after surgery? Will I receive training?
• How long will my child stay in the hospital after the surgery? Can I stay with them?
• What should I do if I feel like my child needs more time in the hospital than our insurance will allow?
• How much time should I expect to allow for my child’s recovery at home? When can my child return to school after surgery?
• Will my child need physical or occupational therapy after the surgery?
• How often will we see you for follow-up care after surgery?
• When will you have the results of my child’s pathology tests? Will I come in to discuss them, or will we talk over the phone?

Chemotherapy

• How is chemotherapy administered?
  • If by mouth (pill), can I obtain it at my local pharmacy or do I need to use a specialty pharmacy?
  • If intravenously (IV), will my child need a central line (port, picc, Hickman) placed?
  • If given IV, how long does each treatment take?
• How long will my child be receiving chemotherapy?
• Who prescribes my child’s chemotherapy?
• What other medications will my child be receiving when s/he receives chemotherapy?
• Where will my child receive their treatment? Do they have to be in the hospital?
• What type of side effects might my child experience?
• Are there medications to help prevent side effects?
• Will there be long-term side effects? If so, are these side effects preventable?
• Will chemotherapy cure my child’s cancer or will they need other types of treatment?
• How will the chemotherapy be paid for?
• How will we know if it is working?
• Will my child lose their hair?
• Will my child need a feeding tube while receiving treatment?

Radiation

• Which type of radiation therapy will my child receive? Is there more than one option for them?
• When will treatment start? When will it end? How often will we have treatments?
• Will my child need to stay in the hospital?
• What can I do to take care of my child before, during, and after treatment?
• How will my child feel during treatment?
• Does my child have to be anesthetized to receive radiation therapy?
• At which facility will my child receive treatment?
• What type of side effects can we expect?
• How will we know the treatment is working?
• How will my child feel after radiation therapy is completed?
• Are there any lasting/long-term effects of radiation treatments? If so, are they preventable?
• What type of precautions do we need to consider while receiving radiation? Can my child be around our other children? Can my child go to school while receiving radiation?
• Will my medical insurance cover all charges for the radiation treatments?
• If I need medications to help with side effects, will they be covered by insurance?
• Will radiation be used in conjunction with other therapies? If so, which ones?

Clinical Trials

Many children receiving cancer treatment participate in clinical trials as part of their treatment plans. You would be given information about the trial in the form of a consent form. Ask questions to be sure you understand the study and what treatments your child will be receiving.

• What is the purpose of this clinical trial? Why is my child a good candidate for this study?
• How does the treatment being studied differ from the current treatments offered? Why do the researchers believe this might be better or work differently?
• How long does the trial last?
• Are there extra tests or treatments involved in the trial?
• What if I agree for my child to participate in the trial, but I change Can we go off the trial? Will my child still receive cancer treatment?
• What are the risks, benefits, and potential side effects associated with the trial therapies?
• How do these compare to the risks, benefits, and potential side effects associated with standard therapy?
• Will my insurance cover the cost of clinical trials?
• Will we have to visit the hospital or clinic more often if we are on a clinical trial? Will my child have to stay in the hospital as part of the trial and if so, for how long?
• What happens if my child experiences an adverse event or a serious side effect as a result of the clinical trial?

(Adapted from the National Cancer Institute)

Palliative Care

• What is pediatric palliative care and what services does it offer?
• Is palliative care the same as hospice?
• Why is my child being referred to a palliative care specialist?
• What will the palliative care team offer to me in conjunction with my child’s standard therapy?
• Will my insurance cover palliative care?
• How long will my child be able to receive palliative care services?
• Where will my child receive palliative care?
• Who provides palliative care services?
• Is there support available for my family in conjunction with palliative care?
• Can my child still receive chemotherapy and radiation while receiving palliative care?