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Ask the oncologist to explain your child’s exact diagnosis and test results, what each treatment is intended to do, whether genetic or tumor testing could affect care, and who is coordinating the team. The treating clinicians—not general information or adult cancer statistics—must interpret your child’s pathology, scans, stage, and options. These questions can help you prepare for a first or follow-up appointment.
Before the appointment: make it easier to get clear answers
Write down your questions and bring a trusted adult if that would help you listen, take notes, or remember what was discussed. Ask the oncologist to explain unfamiliar terms in plain language, and pause when an answer is unclear. You can ask what needs a decision soon and what can wait until you have more information.
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The National Cancer Institute’s Childhood Colorectal Cancer (PDQ®)–Patient Version, updated May 14, 2025, is general patient information—not an individualized treatment plan or formal guideline. Your child’s team is the source for advice about this diagnosis.
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Staging describes whether cancer has spread and how far; it helps the team plan treatment. NCI notes that childhood colorectal cancer is often found after spread to lymph nodes, beyond the bowel, or to other abdominal organs. That general observation cannot establish your child’s stage: ask the team to explain the findings in your child’s reports and scans.
#1 Best Overall
- 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 in pediatric tumors be useful?
- What tests are complete, and what questions will any remaining tests answer?
- What is the TNM stage? What does each part mean in our child’s case?
- Where has the cancer spread, if anywhere, and how certain are those findings so far?
- Are there tumor molecular test results that affect the options?
What is the purpose of the recommended treatment?
Ask the oncologist which options fit your child’s diagnosis, tumor location, extent of disease, and whether the tumor can be removed surgically. NCI’s patient information describes several treatment categories, but it does not mean each is appropriate for every child.
| Treatment category | Situation described in NCI patient information | Ask the oncologist |
|---|---|---|
| Surgery | May be used to remove a tumor when it has not spread. | Can the tumor be removed in our child’s case, and what is the goal and expected impact? |
| Radiation therapy and chemotherapy | May be used for tumors in the rectum or lower colon. | Why are these options being considered for this tumor’s location, and how would they fit into the treatment sequence? |
| Combination chemotherapy | May be used for advanced disease. | What is the intended benefit, and how will the team assess whether it is working? |
| Immunotherapy with nivolumab or pembrolizumab | NCI describes use in specified circumstances when disease cannot be surgically removed, has spread, or progresses after treatment—for example, with certain inherited syndromes or tumor gene changes. | Do our child’s tumor or inherited-risk findings meet the circumstances for considering this, and what is known about benefits and risks for this case? |
For the plan being recommended, ask:
- Is the goal cure, control of the cancer, symptom relief, or something else?
- Why do you recommend this plan over the other options that might fit?
- What are the expected benefits, known risks, and important uncertainties for each option?
- What is the order and timing? Is there a decision we need to make soon?
- How could treatment affect bowel function, nutrition, school, activity, or other parts of daily life?
- How will you monitor response, and what might lead you to change the plan?
What side effects should we watch for, and whom do we call?
Side effects depend on the treatment, dose, and the child’s response. Ask the team to distinguish expected effects from symptoms that need prompt attention; do not rely on a general list to decide whether a symptom is urgent.
- Which side effects are common with the proposed treatment, and which could appear later?
- What can be done to prevent or manage them, and what supportive care is available?
- Which symptoms mean we should call the team right away or seek urgent care?
- What number should we use during business hours and after hours, and what should we do if we cannot reach the team?
Could inherited risk or tumor testing change care?
NCI notes that childhood colorectal cancer can be associated with inherited cancer syndromes. Genetic counseling can help families understand testing choices, possible implications for the child and relatives, and the risks and benefits of receiving genetic information.
- Could an inherited cancer syndrome be involved, and should we meet with a genetic counselor?
- Would tumor testing, inherited-risk testing, or both be appropriate? What could each result change about care?
- What might results mean for siblings or other relatives, and should any family members consider testing?
- How would we receive and discuss results, including uncertain findings?
Who is coordinating the care team?
A pediatric oncologist oversees treatment, but care may involve other specialists. NCI lists examples such as pediatricians, pediatric gastroenterologists, pediatric surgeons, radiation oncologists, pathologists, genetic counselors, pediatric nurse specialists, social workers, rehabilitation specialists, psychologists, and child-life specialists.
- Who is the lead clinician and our main point of contact?
- Which specialists will be involved, what does each contribute, and how are their recommendations coordinated?
- Who can help with practical needs such as school arrangements, travel, or costs?
- What support is available through social work, child life, psychology, nutrition, or rehabilitation?
Should we seek a second opinion?
NCI says a family may seek another opinion to confirm the diagnosis and treatment plan. A second physician may agree with the current recommendation, suggest changes, or provide more information. Ask whether review by another team familiar with pediatric colorectal cancer would be useful before treatment starts, if timing allows.
- How can we obtain the pathology report and slides, scans, and genetic or molecular test results for review?
- Would another pediatric team need any additional records?
- Could a second opinion affect the timing of a treatment decision?
Are clinical trials worth discussing now?
Some children may be candidates for clinical trials, including trials of treatment or supportive and palliative care. Eligibility depends on the specific trial and the child’s circumstances; a listing does not show that a trial is suitable or available for your child. Some trials are open only before treatment begins, so raise the question early.
- Are there trials for this diagnosis, age, and disease status, and would starting treatment affect eligibility?
- What is known about the trial approach compared with the recommended plan?
- What extra visits, tests, or procedures would participation involve?
NCI’s trial search and ClinicalTrials.gov can help families identify listings to discuss with the oncologist; the treating team must assess eligibility and relevance.
What should we ask about outlook and follow-up?
Ask the oncologist for an individualized discussion of outlook. NCI identifies factors that can matter, including whether the tumor was completely removed, whether and where disease has spread, and whether the cancer is newly diagnosed or recurrent. Adult colorectal cancer statistics or typical adult treatment assumptions should not be used as a substitute for a child-specific explanation.
Quick Recap
Best Value
- Which details of our child’s diagnosis most affect the outlook, and what remains uncertain?
- What is the plan for follow-up, including monitoring for recurrence or late effects?
- When should we expect the next update, and whom should we contact with questions between visits?
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