The first 60 days: Childhood cancers (all types)
Cancer in children is rare and different from adult cancer: the common types are leukaemias, brain tumours, lymphomas and embryonal tumours such as neuroblastoma and Wilms tumour, most are curable in well-resourced health systems, and the great challenge is bringing the same cures to the majority of children who live where they are not available. Below, week by week, is what OnCo's record of Childhood cancers (all types) says about the first two months: the order is typical, the timing is yours to ask about. Sections appear only where the record has something to say. Orientation, not medical advice.
What happens now
Staging tests establish exactly what and where the cancer is. Everything else follows from the answers.
Ask which of these were tested and what the results were; see the report reader for what each value means.
These specialties appear in the standard of care for this cancer. In most centres they meet weekly as a tumour board to agree each plan; you can ask when yours was discussed and what was decided.
- SurgeonNamed in the standard of care for: Solid tumours.
- Medical oncologistNamed in the standard of care for: Leukaemias, Solid tumours, Survivorship.
- Clinical oncologist (radiotherapy)Named in the standard of care for: Solid tumours.
- Transplant and cell therapy teamNamed in the standard of care for: Leukaemias.
- Palliative and supportive care teamNamed in the standard of care for: Survivorship.
A second opinion from a centre that treats many similar cases is normal, not rude; the standard of care tells you what to compare it against.
Each row is a setting from the standard of care, in the order it usually arises. Not all will apply to you; your stage and biomarkers decide which do. The guideline grade, where recorded, says how strong the evidence is.
Risk-stratified multi-agent chemotherapy over two to three years for ALL, with immunotherapy (blinatumomab, CAR-T) for high-risk or relapsed disease. See the ALL page.
Surgery, chemotherapy and radiotherapy by risk group in cooperative group protocols; anti-GD2 antibody for high-risk neuroblastoma. See the neuroblastoma, Wilms, sarcoma and brain tumour pages.
Lifelong follow-up for late effects on heart, fertility, growth and second cancers, with a survivorship care plan; trials that reduce therapy where cure rates are high.
Generated from this cancer's standard of care, biomarkers and open problems. Take the group that matches where you are. To tick, add your own and print, open the one-page appointment sheet.
Newly diagnosed
- What is my exact diagnosis, stage, and grade, and which tests established them?Everything else follows from an accurate stage and subtype.
- Which biomarkers have been tested on my tumour (for example Cytogenetics and minimal residual disease in leukaemia, MYCN amplification in neuroblastoma, Molecular subgroups in medulloblastoma, Germline predisposition), and what were the results?These results decide eligibility for targeted therapy, immunotherapy, and trials.
- Which subtype is my cancer, and does that change the recommended treatment?Recognised subtypes for this cancer include Acute lymphoblastic leukaemia, Acute myeloid leukaemia, Brain and spinal cord tumours.
- Is germline (inherited) genetic testing recommended for me or my family?Inherited variants can change treatment and matter for relatives.
Leukaemias
- For my situation (leukaemias), which of the standard options do you recommend and why?Guideline options include: Risk-stratified multi-agent chemotherapy over two to three years for ALL, with immunotherapy (blinatumomab, CAR-T) for high-risk or relapsed disease. See the ALL page.
- Am I a candidate for Blinatumomab, Tisagenlecleucel, and what side effects should I expect?Knowing the expected toxicities helps you plan work, family, and supportive care.
Solid tumours
- For my situation (solid tumours), which of the standard options do you recommend and why?Guideline options include: Surgery, chemotherapy and radiotherapy by risk group in cooperative group protocols; anti-GD2 antibody for high-risk neuroblastoma. See the neuroblastoma, Wilms, sarcoma and brain tumour pages.
- Am I a candidate for Dinutuximab (ch14.18) / dinutuximab beta, and what side effects should I expect?Knowing the expected toxicities helps you plan work, family, and supportive care.
Survivorship
- For my situation (survivorship), which of the standard options do you recommend and why?Guideline options include: Lifelong follow-up for late effects on heart, fertility, growth and second cancers, with a survivorship care plan; trials that reduce therapy where cure rates are high.
Any stage
- Are there clinical trials I could join, for example of Naxitamab, Tovorafenib, Obecabtagene autoleucel?Trials are how the next standard of care is set; asking early keeps options open.
- Would a second opinion at a high-volume centre change anything, and can you help arrange it?Rare or high-stakes decisions benefit from a centre that treats many similar patients.
- What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?Supportive care improves quality of life and helps patients complete treatment.
- I read that “Most children with cancer live where cure rates are below 30%”. How does that affect my plan?Open problems are where trials and second opinions matter most.
- I read that “Late effects affect the majority of long-term survivors”. How does that affect my plan?Open problems are where trials and second opinions matter most.
Trials open now for this cancer in OnCo, largest phase first. Joining a trial is a decision like any other: ask what the comparison arm is, whether a placebo is used, and what happens if you leave. The cancer page searches ClinicalTrials.gov live for more.
- Evaluation of PK, PD, Efficacy, Safety, and Immunogenicity of IV Ravulizumab in Pediatric Participants With Generalized Myasthenia GravisPhase 3 · active · NCT05644561Phase 3, Open-label, Single-arm, Multicenter Study Evaluating Pharmacokinetics, Pharmacodynamics, Efficacy, Safety, and Immunogenicity of IV Ravulizumab in Pediatric Participants (6 to <18 Years) With Generalized Myasthenia Gravis (gMG)
- PK, PD, Safety, and Efficacy Study of Gefurulimab in Pediatric Patients With AChR+ Generalized Myasthenia GravisPhase 3 · recruiting · NCT06607627An Open-Label, Single-arm Study to Evaluate the Pharmacokinetics (PK), Pharmacodynamics (PD), Safety, and Efficacy of Gefurulimab in Pediatric Patients (6 to < 18 Years of Age) With Generalized Myasthenia Gravis (gMG) Who Express Acetylcholine Receptor Antibodies (AChR+)
- A Study of Rozanolixizumab in Pediatric Study Participants With Moderate to Severe Generalized Myasthenia GravisPhase 2/3 · active · NCT06149559An Open-label, Single-arm Study Evaluating the Activity, Safety, and Pharmacokinetics of Rozanolixizumab in Pediatric Study Participants With Moderate to Severe Generalized Myasthenia Gravis
- A Study to Evaluate Subcutaneous Zilucoplan in Pediatric Participants With Generalized Myasthenia GravisPhase 2/3 · recruiting · NCT06055959A Multicenter Open-Label, Uncontrolled Study to Evaluate the Pharmacokinetics, Pharmacodynamics, Safety, Tolerability, and Activity of Zilucoplan in Pediatric Study Participants From 2 to Less Than 18 Years of Age With Acetylcholine Receptor Antibody Positive Generalized Myasthenia Gravis
- Alpelisib in Pediatric and Adult Patients With Lymphatic Malformations Associated With a PIK3CA Mutation.Phase 2/3 · recruiting · NCT05948943A Two-stage Double-blind, Randomized, Placebo-controlled Study to Assess the Efficacy, Safety and Pharmacokinetics of Alpelisib in Pediatric and Adult Patients With Lymphatic Malformations Associated With a PIK3CA Mutation.
Much of what helps in the first weeks is free if you know to ask: testing, helplines, rides and lodging, second opinions, trial travel.
- Childhood cancers (all types): the full pageCancer in children is rare and different from adult cancer: the common types are leukaemias, brain tumours, lymphomas and embryonal tumours such as neuroblastoma and Wilms tumour, most are curable in well-resourced health systems, and the great challenge is bringing the same cures to the majority of children who live where they are not available.
- One-page appointment sheetYour questions, the words you may hear, what to bring, and space for the answers. Print it.
- Treatment sequencingWhich treatment tends to follow which, line by line.
- NavigatorStandard of care for your stage, what you have tried, and trials near you.
- Second cancers after radiotherapy: Radiotherapy can itself cause a new cancer in the treated area, typically ten to thirty years later.
Every term links to the glossary.