The first 60 days: Germ cell tumours of childhood and adolescence (extracranial and CNS)
Germ cell tumours arise from the cells meant to become eggs or sperm and can appear in the gonads, lower back, chest or brain. They are among the most curable childhood cancers because they respond to cisplatin chemotherapy and release blood markers that make monitoring easy. The work now is to cure with less: surgery alone for low-risk tumours, gentler platinum drugs, and protecting hearing. Below, week by week, is what OnCo's record of Germ cell tumours of childhood and adolescence (extracranial and CNS) 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.
- PathologistNamed in the standard of care for: Low-risk malignant extracranial GCT (e.g. stage I testicular, stage I ovarian).
- RadiologistNamed in the standard of care for: Low-risk malignant extracranial GCT (e.g. stage I testicular, stage I ovarian).
- SurgeonNamed in the standard of care for: Low-risk malignant extracranial GCT (e.g. stage I testicular, stage I ovarian), Standard- and high-risk malignant extracranial GCT, CNS non-germinomatous GCT.
- Medical oncologistNamed in the standard of care for: Low-risk malignant extracranial GCT (e.g. stage I testicular, stage I ovarian), Standard- and high-risk malignant extracranial GCT, CNS germinoma, CNS non-germinomatous GCT.
- Clinical oncologist (radiotherapy)Named in the standard of care for: CNS germinoma, CNS non-germinomatous GCT.
- Transplant and cell therapy teamNamed in the standard of care for: Standard- and high-risk malignant extracranial GCT, CNS germinoma, CNS non-germinomatous GCT.
- Palliative and supportive care teamNamed in the standard of care for: Standard- and high-risk malignant extracranial GCT.
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.
- 1.Low-risk malignant extracranial GCT (e.g. stage I testicular, stage I ovarian)COG/CCLG AGCT1531; NCI PDQ
Complete resection followed by active surveillance with serial tumour markers and imaging; chemotherapy only for relapse (AGCT1531 stratum).
Cisplatin, etoposide and bleomycin (PEb) or carboplatin-based JEb, with surgery of residual masses; sodium thiosulfate for otoprotection; high-dose chemotherapy with stem-cell rescue at relapse.
Platinum-based chemotherapy followed by reduced-dose whole-ventricular radiotherapy with tumour boost (SIOP CNS GCT II, ACNS1123).
Intensive platinum-based chemotherapy, second-look surgery for residual disease, then craniospinal or whole-ventricular radiotherapy depending on response and stage.
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 Serum and cerebrospinal-fluid AFP, Serum and cerebrospinal-fluid beta-hCG, Lactate dehydrogenase, Isochromosome 12p, MaGIC risk group), 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 Teratoma, Yolk sac tumour, Germinoma / seminoma / dysgerminoma.
- Is germline (inherited) genetic testing recommended for me or my family?Inherited variants can change treatment and matter for relatives.
Low-risk malignant extracranial GCT (e.g. stage I testicular, stage I ovarian)
- For my situation (low-risk malignant extracranial gct (e.g. stage i testicular, stage i ovarian)), which of the standard options do you recommend and why?Guideline options include: Complete resection followed by active surveillance with serial tumour markers and imaging; chemotherapy only for relapse (AGCT1531 stratum).
Standard- and high-risk malignant extracranial GCT
- For my situation (standard- and high-risk malignant extracranial gct), which of the standard options do you recommend and why?Guideline options include: Cisplatin, etoposide and bleomycin (PEb) or carboplatin-based JEb, with surgery of residual masses; sodium thiosulfate for otoprotection; high-dose chemotherapy with stem-cell rescue at relapse.
- Am I a candidate for Cisplatin, Carboplatin, Etoposide or related drugs, and what side effects should I expect?Knowing the expected toxicities helps you plan work, family, and supportive care.
CNS germinoma
- For my situation (cns germinoma), which of the standard options do you recommend and why?Guideline options include: Platinum-based chemotherapy followed by reduced-dose whole-ventricular radiotherapy with tumour boost (SIOP CNS GCT II, ACNS1123).
- Am I a candidate for Carboplatin, Etoposide, and what side effects should I expect?Knowing the expected toxicities helps you plan work, family, and supportive care.
CNS non-germinomatous GCT
- For my situation (cns non-germinomatous gct), which of the standard options do you recommend and why?Guideline options include: Intensive platinum-based chemotherapy, second-look surgery for residual disease, then craniospinal or whole-ventricular radiotherapy depending on response and stage.
- Am I a candidate for Cisplatin, Ifosfamide, Etoposide, and what side effects should I expect?Knowing the expected toxicities helps you plan work, family, and supportive care.
Any stage
- Are there clinical trials I could join, for example of Sodium thiosulfate (otoprotectant), Active surveillance, Oncofertility and fertility preservation, Proton therapy?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 “Whether carboplatin can fully replace cisplatin without losing cures in standard-risk disease; AGCT1531 is the answer trial”. How does that affect my plan?Open problems are where trials and second opinions matter most.
- I read that “Relapsed and platinum-refractory disease, especially mediastinal and CNS non-germinomatous tumours, where high-dose chemotherapy is the only option”. How does that affect my plan?Open problems are where trials and second opinions matter most.
Much of what helps in the first weeks is free if you know to ask: testing, helplines, rides and lodging, second opinions, trial travel.
- Germ cell tumours of childhood and adolescence (extracranial and CNS): the full pageGerm cell tumours arise from the cells meant to become eggs or sperm and can appear in the gonads, lower back, chest or brain. They are among the most curable childhood cancers because they respond to cisplatin chemotherapy and release blood markers that make monitoring easy. The work now is to cure with less: surgery alone for low-risk tumours, gentler platinum drugs, and protecting hearing.
- 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.
- Alpha-fetoprotein (AFP): Alpha-fetoprotein is a protein made by the fetal liver that a substantial share of hepatocellular carcinomas switch back on.
- Retroperitoneum: The space at the back of the abdomen, behind the gut's lining, holding the kidneys, adrenals, pancreas, aorta and the para-aortic lymph nodes.
- Late effects and survivorship toxicity: Health problems appearing months or decades after treatment ends: heart damage, infertility, second cancers, lymphoedema, dry mouth, memory problems, weak bones.
- Adolescent and young adult (AYA) oncology: Cancer in people aged 15-39, about 90,000 US cases a year, with a distinct mix of cancers, slower survival improvement than children or older adults, and specific needs: fertility, education and work, psychosocial support and trial access.
Every term links to the glossary.