Appointment sheet
Mediastinal germ cell tumour
Prepared with OnCo (onco.cc/prep/mediastinal-germ-cell-tumour/). Orientation, not medical advice; your team knows your case.
My details
Name
Date of appointment
Hospital and clinician
Who is coming with me
What I know, what is unclear, changes to discuss
Saved in this browserWhat I know so far
What is unclear to me
Changes since last time
My questions
11 on the sheetNewly diagnosed
- 1.What is my exact diagnosis, stage, and grade, and which tests established them?
- 2.Which biomarkers have been tested on my tumour (for example Alpha-fetoprotein and beta-hCG at diagnosis and after each cycle, Lactate dehydrogenase, Isochromosome 12p on the biopsy, Blood count during follow-up, for the leukaemia risk in non-seminoma), and what were the results?
- 3.Which subtype is my cancer, and does that change the recommended treatment?
- 4.Is germline (inherited) genetic testing recommended for me or my family?
Mediastinal seminoma
- 5.For my situation (mediastinal seminoma), which of the standard options do you recommend and why?
- 6.Am I a candidate for Cisplatin, Etoposide, and what side effects should I expect?
Mediastinal non-seminoma
- 7.For my situation (mediastinal non-seminoma), which of the standard options do you recommend and why?
- 8.Am I a candidate for Bleomycin, Etoposide, Cisplatin or related drugs, and what side effects should I expect?
- 9.How do the results of TIGER: standard-dose TIP versus high-dose TI-CE with stem cell transplant as first salvage for relapsed germ cell tumours apply to someone like me?
Any stage
- 10.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
- 11.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
The words I may hear
- 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.
- Alpha-fetoprotein (AFP): Alpha-fetoprotein is a protein made by the fetal liver that a substantial share of hepatocellular carcinomas switch back on.
- 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.
Tests and results to bring
Biomarker results to ask for: Alpha-fetoprotein and beta-hCG at diagnosis and after each cycle, Lactate dehydrogenase, Isochromosome 12p on the biopsy, Blood count during follow-up, for the leukaemia risk in non-seminoma.
Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.
The treatments I may be offered
- Mediastinal seminoma: Treated as extragonadal seminoma: cisplatin-based chemotherapy, with PET to judge residual masses. (Extragonadal germ cell tumour, Cisplatin, Etoposide)
- Mediastinal non-seminoma: Four cycles of BEP or VIP, then resection of residual disease in a centre that does this surgery often; salvage as in the TIGER trial. (Extragonadal germ cell tumour, Bleomycin, Etoposide, Cisplatin, Ifosfamide, TIGER: standard-dose TIP versus high-dose TI-CE with stem cell transplant as first salvage for relapsed germ cell tumours)
From the standard of care recorded for this cancer; which apply depends on your stage and biomarkers. Ask which the team recommends and why.
Answers and next steps
Saved in this browserWhat I was told
Agreed next steps, dates and who to call