The first 60 days: Extragonadal germ cell tumour
Extragonadal germ cell tumours are the same cancers as testicular germ cell tumours but arising in the midline of the body, most often the chest or the back of the abdomen. Seminomas are highly curable with chemotherapy; non-seminomas of the chest are the hardest germ cell tumours to cure and are treated with intensive chemotherapy followed by surgery. Below, week by week, is what OnCo's record of Extragonadal germ cell tumour 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: Seminoma (mediastinal or retroperitoneal).
- SurgeonNamed in the standard of care for: Seminoma (mediastinal or retroperitoneal), Non-seminoma, retroperitoneal, Non-seminoma, mediastinal (poor risk).
- Medical oncologistNamed in the standard of care for: Seminoma (mediastinal or retroperitoneal), Non-seminoma, retroperitoneal, Non-seminoma, mediastinal (poor risk).
- Clinical oncologist (radiotherapy)Named in the standard of care for: Seminoma (mediastinal or retroperitoneal).
- Transplant and cell therapy teamNamed in the standard of care for: Seminoma (mediastinal or retroperitoneal), Non-seminoma, retroperitoneal, Non-seminoma, mediastinal (poor risk).
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.
BEP for three cycles or EP for four; radiotherapy only for small retroperitoneal disease; PET to assess residual masses.
BEP for three or four cycles by IGCCCG risk group, then resection of residual masses over one centimetre.
Four cycles of BEP or VIP, then surgery of residual disease; consider high-dose chemotherapy with autologous stem cell rescue at relapse; treat in a specialist centre.
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, Human chorionic gonadotropin, Lactate dehydrogenase, IGCCCG risk group, Isochromosome 12p), 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 Mediastinal seminoma, Primary mediastinal non-seminomatous germ cell tumour, Retroperitoneal germ cell tumour.
- Is germline (inherited) genetic testing recommended for me or my family?Inherited variants can change treatment and matter for relatives.
Seminoma (mediastinal or retroperitoneal)
- For my situation (seminoma (mediastinal or retroperitoneal)), which of the standard options do you recommend and why?Guideline options include: BEP for three cycles or EP for four; radiotherapy only for small retroperitoneal disease; PET to assess residual masses.
- Am I a candidate for Bleomycin, Etoposide, Cisplatin, and what side effects should I expect?Knowing the expected toxicities helps you plan work, family, and supportive care.
Non-seminoma, retroperitoneal
- For my situation (non-seminoma, retroperitoneal), which of the standard options do you recommend and why?Guideline options include: BEP for three or four cycles by IGCCCG risk group, then resection of residual masses over one centimetre.
- Am I a candidate for Bleomycin, Etoposide, Cisplatin, and what side effects should I expect?Knowing the expected toxicities helps you plan work, family, and supportive care.
Non-seminoma, mediastinal (poor risk)
- For my situation (non-seminoma, mediastinal (poor risk)), which of the standard options do you recommend and why?Guideline options include: Four cycles of BEP or VIP, then surgery of residual disease; consider high-dose chemotherapy with autologous stem cell rescue at relapse; treat in a specialist centre.
- Am I a candidate for Etoposide, Ifosfamide, Cisplatin, 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 TIGER: standard-dose TIP versus high-dose TI-CE with stem cell transplant as first salvage for relapsed germ cell tumours, 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 “Cure rates for mediastinal non-seminoma remain well below those of testicular primaries”. How does that affect my plan?Open problems are where trials and second opinions matter most.
- I read that “The role of high-dose chemotherapy in first-line poor-risk disease is still being tested (TIGER trial)”. 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.
Much of what helps in the first weeks is free if you know to ask: testing, helplines, rides and lodging, second opinions, trial travel.
- Extragonadal germ cell tumour: the full pageExtragonadal germ cell tumours are the same cancers as testicular germ cell tumours but arising in the midline of the body, most often the chest or the back of the abdomen. Seminomas are highly curable with chemotherapy; non-seminomas of the chest are the hardest germ cell tumours to cure and are treated with intensive chemotherapy followed by surgery.
- 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.
- Autologous stem cell transplant (ASCT): High-dose chemotherapy (melphalan in myeloma, BEAM in lymphoma) that would permanently destroy the bone marrow, made survivable by giving the patient back their own previously collected stem cells, which engraft in 10-14 days.
- Tumour markers (CEA, LDH, chromogranin, thyroglobulin): Substances released into the blood by some cancers that can be measured with a simple test, useful for tracking whether treatment is working or the cancer is coming back, but rarely good enough to diagnose or screen.
- Alpha-fetoprotein (AFP): Alpha-fetoprotein is a protein made by the fetal liver that a substantial share of hepatocellular carcinomas switch back on.
Every term links to the glossary.