Questions to Ask About Childhood Cancer Treatment

This page is for parents of a child just diagnosed with cancer. It lists the questions to ask the care team, from the exact diagnosis to fertility, costs, and who to call.

Almost every good question depends on one thing: the precise diagnosis. Not "leukemia," but which leukemia, which subtype, which risk group, and which genetic markers were found.

Two openers to start with:

• What type of cancer does my child have, exactly?
• Can you walk me through my child's pathology report and scan results?

Ask for the pathology report on paper. Ask someone to read it with you and mark the line that names the diagnosis. Ask whether your child's cancer is sorted into a risk group, and what that group means for the plan. If a marker is still pending, ask which one, and what each possible answer would change.

Write the exact wording down. You will repeat it to a school nurse, an insurer, and an emergency department clerk, probably in the same week.

NCI says children with cancer are often treated at a children's cancer center, a hospital or unit with special training and expertise in caring for children. NCI says the specialists there are likely to include pediatric oncologists and hematologists, pediatric surgical specialists, radiation oncologists, pediatric nurse specialists and social workers.

Many of these centers belong to the Children's Oncology Group, which NCI supports and describes as the world's largest organization running clinical research to improve care for children with cancer.

So ask two direct questions. Is this center a Children's Oncology Group site? And how many children with this diagnosis does this team treat in a year?

Ask for the treatment roadmap in writing. A printed plan can turn an overwhelming stretch of time into a sequence you can see.

Useful questions here:

• What are the treatment options for my child?
• Which plan do you recommend, and why?
• What is the goal of each part of treatment?
• When does treatment start, and what has to happen first?
• How long will treatment take?
• Will my child need a device to deliver medicines?

That last one is about a central line or port, a tube or small device placed in a vein for medicine and blood draws. Ask which type is planned, why that one, when it is placed, and who trains you to care for it.

Then ask what the calendar looks like. How many days a month at the hospital? How many overnight stays are expected? Which visits can happen at a clinic closer to home?

Parents often hear "clinical trial" and think experiment of last resort. In pediatric oncology that framing is backwards.

NCI states that most of the progress in finding curative therapies for childhood cancers has come through clinical trials. The results show it. NCI reports that cancer death rates for children ages 0 to 14 declined by 70 percent from 1970 through 2020.

Ask early, before the plan is set:

• Is there an open trial for this diagnosis, here or at another center?
• What is the standard treatment this trial is compared with?
• What extra visits, tests, or biopsies does the trial require?
• Who pays for what?
• If we say no, does anything about our care change?

Ask about tumor genetic testing too. In an early report posted in 2019, the NCI-COG Pediatric MATCH trial found that 24 percent of young patients with advanced cancer whose tumors were tested for genetic changes were eligible for one of the targeted drugs being tested.

NCI explains that children cannot give informed consent until they turn 18, so they are asked for their assent, meaning their own agreement to take part. Usually both parents need to give permission. NCI says some children as young as 7 may be able to take part in the assent process, but this varies by child and by the group running the trial.

Informed consent is a process, not a signature. NCI describes it as the research team explaining the trial before you decide, in language you can follow, with time for questions. You may leave a study at any time, even after signing.

Two structures protect trial participants. An institutional review board, or IRB, reviews the trial before it can enroll anyone, and NCI says IRBs review trial protocols yearly and can change or stop a trial to protect participants. Some trials, especially phase 3 trials, also use a data and safety monitoring board that reviews progress and monitors safety.

Ask for the consent document overnight. Reading it at the kitchen table beats reading it in a clinic room while a child cries.

These are two different conversations, and both belong in the first week.

For the near term, ask what the short-term side effects of each treatment are, and what can be done to relieve them. Add the ones that shape daily life: hair loss, mouth sores, nausea, low blood counts, steroid mood swings, and how each is managed at home.

For the long term, ask these:

• What long-term side effects are possible, including ones that may show up years later?
• Could treatment affect my child's growth and development?
• Could treatment affect my child's ability to have children someday?

Then get specific, because the details of treatment shape follow-up care later. Ask for the planned total dose of any anthracycline chemotherapy in milligrams per square meter. Ask whether radiation is planned and where it will be aimed. Ask whether any alkylating agents are included. Write the answers in the same notebook as the diagnosis.

NCI advises talking with your doctor and a fertility specialist before cancer treatment starts. That makes this a topic you should not save for later.

Ask on day one whether treatment carries fertility risk, and ask for a referral to a fertility specialist. Ask whether treatment can safely wait the days that preservation would take. For a child who has not gone through puberty, ask specifically whether an ovarian or testicular tissue freezing protocol is available, here or elsewhere.

Three more that families tend to skip:

• Who can help us manage the costs of treatment?
• What support services are there for my child and for our family?
• Who do we call with questions or problems?

Ask the third one twice: once for business hours, once for 2 a.m. Get the after-hours number written down, not described. Ask what to say when you call so you reach the oncology team rather than a general line.

Add school. Ask for a written letter listing restrictions, and ask who at the hospital helps with school plans.

A question worth asking: "Should I seek a second opinion? Can you help me obtain a second opinion?"

Asking your child's oncologist to help arrange one is not an insult and is a common request. Ask how many days a second opinion would add, and whether treatment can safely start while the review happens.

• Bring two people. One listens, one writes.
• Ask whether you may record the conversation.
• Bring five written questions and ask the most important one first.
• End with: "What is the one thing you would want me to remember from today?"
• Ask for the plain-language handout or printout on the way out.

See Childhood Cancer Overview and Where Children with Cancer Are Treated for background, and Clinical Trials for Children for trial details. Also useful: Late Effects of Childhood Cancer Treatment, Childhood Cancer Late Effects: Questions for Follow-Up, Returning to School After Cancer, and Helping a Child Take Medicine During Cancer Treatment.

• Childhood Cancers, National Cancer Institute
• Research on Childhood Cancers, National Cancer Institute
• Are Clinical Trials Safe? National Cancer Institute
• Children with Cancer: A Guide for Parents, National Cancer Institute
• Fertility Issues in Girls and Women with Cancer, National Cancer Institute