The first 60 days: Germ cell tumours of childhood and adolescence (extracranial and CNS)

Staging tests establish exactly what and where the cancer is. Everything else follows from the answers.

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. 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).

   Alpha-fetoprotein (AFP)Active surveillanceAGCT1531
2. 2.Standard- and high-risk malignant extracranial GCTNCI PDQ; MaGIC risk classification

   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.

   CisplatinCarboplatinEtoposideBleomycinSodium thiosulfate (otoprotectant)Autologous stem cell transplant (high-dose therapy)
3. 3.CNS germinomaNCI PDQ: childhood CNS germ cell tumours

   Platinum-based chemotherapy followed by reduced-dose whole-ventricular radiotherapy with tumour boost (SIOP CNS GCT II, ACNS1123).

   CarboplatinEtoposideIMRT / IGRT (modern external beam)Proton therapyACNS1123
4. 4.CNS non-germinomatous GCT

   Intensive platinum-based chemotherapy, second-look surgery for residual disease, then craniospinal or whole-ventricular radiotherapy depending on response and stage.

   CisplatinIfosfamideEtoposideProton therapy

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.

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.

• AGCT1531Phase 3 · recruiting · NCT03067181Malignant germ cell tumours in children, adolescents and adults up to 50: active surveillance after surgery for low-risk stage I disease, and a randomised comparison of carboplatin against cisplatin with bleomycin and etoposide for standard-risk disease, with hearing loss as a key outcome
• Treatment of Newly Diagnosed Central Malignant Germ Cell Tumor People With Teniposide Injection Combined With CisplatinPhase 2 · recruiting · NCT07188441A Single-center, Single-arm, Open-label Study of the Combination of Teniposide Injection and Cisplatin in the Treatment of Newly Diagnosed Patients With Central Malignant Germ Cell Tumors.

Much of what helps in the first weeks is free if you know to ask: testing, helplines, rides and lodging, second opinions, trial travel.

• Free in oncologyFree testing, helplines, rides and lodging, second opinions and trial travel help, with who is eligible.
• Financial helpManufacturer programmes, national schemes and charities by country and product.
• Second opinionExpert centres for this cancer in your country and how referral works.

• 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.