The first 60 days: Central nervous system germ cell tumours (germinoma and non-germinomatous)
Germ cell tumours of the brain grow near the pineal gland or above the pituitary in teenagers. The commonest kind, germinoma, is so sensitive to radiation and chemotherapy that most patients are cured; the other kinds need stronger chemotherapy and radiotherapy, and doctors measure two proteins in the blood and spinal fluid to tell them apart and to follow treatment. Below, week by week, is what OnCo's record of Central nervous system germ cell tumours (germinoma and non-germinomatous) 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.
- RadiologistNamed in the standard of care for: Teratoma.
- SurgeonNamed in the standard of care for: Non-germinomatous germ cell tumour, Teratoma.
- Medical oncologistNamed in the standard of care for: Localised germinoma, Disseminated germinoma, Non-germinomatous germ cell tumour, Teratoma and 1 more.
- Clinical oncologist (radiotherapy)Named in the standard of care for: Localised germinoma, Disseminated germinoma, Non-germinomatous germ cell tumour, Relapse.
- Transplant and cell therapy teamNamed in the standard of care for: Localised germinoma, Non-germinomatous germ cell tumour, Relapse.
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.
Platinum-based chemotherapy (carboplatin and etoposide, with ifosfamide in the SIOP schedule) followed by reduced-dose whole-ventricular irradiation with a tumour boost (SIOP CNS GCT II, ACNS1123); craniospinal irradiation alone remains an alternative in adults.
Craniospinal irradiation with boosts, with or without chemotherapy.
Intensive cisplatin or carboplatin, etoposide and ifosfamide chemotherapy, second-look surgery for residual disease, then craniospinal or whole-ventricular irradiation depending on stage and response (ACNS0122, ACNS1123, SIOP CNS GCT II).
- 4.Teratoma
Complete surgical resection; growing teratoma after chemotherapy is also managed surgically.
- 5.Relapse
High-dose chemotherapy (thiotepa-based) with autologous stem cell rescue, with re-irradiation where possible.
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 Alpha-fetoprotein in serum and cerebrospinal fluid, Beta-hCG in serum and cerebrospinal fluid, Placental alkaline phosphatase and c-KIT on germinoma cells, Cerebrospinal fluid cytology and spinal MRI for staging, Pituitary hormone panel for suprasellar tumours), 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 Germinoma of the pineal or suprasellar region, Non-germinomatous germ cell tumour: embryonal carcinoma, yolk sac tumour, choriocarcinoma, mixed, Mature and immature teratoma.
- Is germline (inherited) genetic testing recommended for me or my family?Inherited variants can change treatment and matter for relatives.
Localised germinoma
- For my situation (localised germinoma), which of the standard options do you recommend and why?Guideline options include: Platinum-based chemotherapy (carboplatin and etoposide, with ifosfamide in the SIOP schedule) followed by reduced-dose whole-ventricular irradiation with a tumour boost (SIOP CNS GCT II, ACNS1123); craniospinal irradiation alone remains an alternative in adults.
- Am I a candidate for Carboplatin, Etoposide, Ifosfamide, and what side effects should I expect?Knowing the expected toxicities helps you plan work, family, and supportive care.
Disseminated germinoma
- For my situation (disseminated germinoma), which of the standard options do you recommend and why?Guideline options include: Craniospinal irradiation with boosts, with or without chemotherapy.
Non-germinomatous germ cell tumour
- For my situation (non-germinomatous germ cell tumour), which of the standard options do you recommend and why?Guideline options include: Intensive cisplatin or carboplatin, etoposide and ifosfamide chemotherapy, second-look surgery for residual disease, then craniospinal or whole-ventricular irradiation depending on stage and response (ACNS0122, ACNS1123, SIOP CNS GCT II).
- 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.
Teratoma
- For my situation (teratoma), which of the standard options do you recommend and why?Guideline options include: Complete surgical resection; growing teratoma after chemotherapy is also managed surgically.
Relapse
- For my situation (relapse), which of the standard options do you recommend and why?Guideline options include: High-dose chemotherapy (thiotepa-based) with autologous stem cell rescue, with re-irradiation where possible.
- Am I a candidate for Thiotepa, 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 Proton therapy, Autologous stem cell transplant (high-dose 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 “Which non-germinomatous patients can safely avoid craniospinal irradiation”. How does that affect my plan?Open problems are where trials and second opinions matter most.
- I read that “Late endocrine, cognitive and vascular effects of radiotherapy in survivors treated as teenagers”. 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.
- Central nervous system germ cell tumours (germinoma and non-germinomatous): the full pageGerm cell tumours of the brain grow near the pineal gland or above the pituitary in teenagers. The commonest kind, germinoma, is so sensitive to radiation and chemotherapy that most patients are cured; the other kinds need stronger chemotherapy and radiotherapy, and doctors measure two proteins in the blood and spinal fluid to tell them apart and to follow treatment.
- 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.
- Re-irradiation: Giving radiotherapy again to a region that has already been treated, once thought impossible because normal tissues remember the first dose.
- Alpha-fetoprotein (AFP): Alpha-fetoprotein is a protein made by the fetal liver that a substantial share of hepatocellular carcinomas switch back on.
- 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.
Every term links to the glossary.