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Ask the oncologist to explain your child’s diagnosis and test results, what the proposed treatment is meant to do, what alternatives or uncertainties matter, and what decisions are time-sensitive. Also ask who is coordinating care, whether genetic counseling or a second opinion is appropriate, and whom to call with concerns. The treating team—not general information—must interpret your child’s pathology, imaging, stage, and options.
Start by understanding the diagnosis and test results
Before comparing treatments, ask the oncologist to walk through what is known and what is still being investigated. Staging describes whether and how far cancer has spread and helps guide treatment planning, but general patterns cannot establish an individual child’s stage.
- What is the exact diagnosis, and where did the cancer start?
- What did the biopsy and pathology report show? Would review by a pathologist experienced with pediatric tumors be useful?
- Which tests are complete, and which remain? What question will each test answer, and when should we expect results?
- What is the TNM stage? Could you explain each part in plain language and show us how the results support it?
- Where has the cancer spread, if anywhere? How certain are those findings, and is any part of the picture still unclear?
- Are molecular findings from the tumor available or still pending, and could any affect treatment choices?
NCI’s patient information notes that childhood colorectal cancer is often found after spread to lymph nodes, beyond the bowel, or to other abdominal organs. That general observation does not tell you what has happened in your child’s case; ask the oncologist to interpret the actual scans and pathology.
Compare the treatment options for your child
Ask the team to describe the purpose, sequence, likely trade-offs, and uncertainties of each option they consider appropriate. NCI’s patient-facing guidance describes categories that can include surgery, radiation therapy, chemotherapy, and, in specified circumstances, immunotherapy. Which options apply depends on details such as tumor location, spread, whether it can be surgically removed, and certain inherited syndromes or tumor gene changes. The categories are not a recommendation for an individual child.
- What is the goal of the recommended treatment in our child’s case: cure, control, symptom relief, or another goal?
- Which options are appropriate for this diagnosis and stage, and why do you recommend this plan?
- What is the proposed order and timing? Is there a decision we need to make soon, and what makes it time-sensitive?
- For each option, what benefits and risks are known, and what remains uncertain?
- What short-term side effects and possible later effects should we discuss? Which symptoms mean we should seek help urgently?
- How could treatment affect bowel function, nutrition, school, activity, or other parts of daily life?
- How will you assess whether treatment is working, and when will you revisit the plan?
Ask for explanations in ordinary language and pause the conversation when you need a term clarified. You can also ask the clinician to distinguish what is known about your child from what is uncertain.
Find out who is coordinating care
A pediatric oncologist oversees treatment, but care may involve several specialists. NCI lists examples including pediatricians, pediatric gastroenterologists, pediatric surgeons, radiation oncologists, pathologists, genetic counselors, pediatric nurse specialists, social workers, rehabilitation specialists, psychologists, and child-life specialists.
Rank #2
- Track important events like birthdays, anniversaries, holidays, and other special occasions so you don’t forget.
- Keep up with activities such as meetings, dates, appointments, and deadlines.
- Organize work projects and tasks to stay on track throughout the year.
- Jot down ideas and keep a running “to do” list of things you want to accomplish.
- Set reminders for yourself to motivate yourself to reach your goals.
- Who is the lead clinician and our main point of contact?
- Which specialists are involved now, and what will each contribute?
- How are recommendations coordinated, and who will explain them if specialists suggest different approaches?
- Who should we contact during business hours and after hours, and what number should we use?
Ask whether inherited risk or genetic counseling matters
Some childhood colorectal cancers can be associated with inherited cancer syndromes. A genetic counselor can help explain testing choices and what results could mean for the child and relatives. Ask:
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- Are you considering testing of the tumor, inherited-risk testing, or both? What would each test tell us?
- How could a result change treatment or follow-up for our child?
- Could the result have implications for siblings or other relatives, and should any family members consider testing?
- What are the benefits and risks of having this genetic information, and when should we expect results?
Raise a second opinion and clinical trials early
Second opinion
It is reasonable to ask whether review by another team familiar with pediatric colorectal cancer could help confirm the diagnosis or treatment plan. NCI notes that a second physician may review genetic test results, pathology reports and slides, and scans, then agree with the plan, suggest changes, or provide more information.
- Would you recommend a second opinion before treatment begins, or is there a reason to proceed first?
- How can we obtain the pathology report and slides, imaging, and genetic or molecular test results for another team to review?
Clinical trials
Some children may be candidates for clinical trials, including trials focused on treatment or supportive and palliative care. Eligibility and timing depend on the study and the child’s situation; some trials are available only before treatment starts.
- Are there trials relevant to this diagnosis, age, and disease status?
- Could starting treatment affect eligibility, and how soon would we need to decide?
- How does a trial compare with the recommended plan, what is uncertain, and what additional visits or procedures would it involve?
The NCI trial search and ClinicalTrials.gov can be starting points for a discussion. A listing alone does not establish that a trial is suitable or available for your child; ask the oncology team to check eligibility and timing.
Rank #4
Plan for side effects, support, and follow-up
Side effects depend on the treatment, dose, and the child’s response. Ask for a specific plan for monitoring and help managing them.
- Which side effects should we expect during treatment, and what can help manage them?
- Which symptoms require an urgent call or other immediate action, and what number should we use at night or on weekends?
- What supportive services are available, such as social work, child-life support, psychology, nutrition, or rehabilitation?
- What is the plan for monitoring response and checking for recurrence or late effects?
- Who can help with practical needs such as travel, school arrangements, or costs?
Prognosis depends on factors including whether the tumor was completely removed, whether and where disease has spread, and whether the cancer is newly diagnosed or recurrent. Ask the oncologist what can be said from your child’s results now, what remains uncertain, and when the outlook may be clearer.
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Make the appointment easier to use
- Write down your questions and the answers you want to remember; a notebook or phone note is optional.
- If it would help, bring another trusted adult to listen, take notes, or help ask questions.
- Ask for a plain-language summary of the plan, including next steps, timing, and whom to contact.
- Before leaving, check that you know which results are pending, who will share them, and when to follow up.
The National Cancer Institute’s “Childhood Colorectal Cancer (PDQ®)–Patient Version,” updated May 14, 2025, provides general patient information, not a formal guideline or individualized medical advice. Only your child’s treating team can interpret the specific findings and recommend care.
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