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Living with cancer· Appointment prep

Appointment sheet: Extragonadal germ cell tumour

One page to bring and write on: your details, the questions for Extragonadal germ cell tumour plus your own, the words you may hear, what to bring, the treatments the standard of care names, and room for the answers and agreed next steps. What you type stays in this browser. Print it or save it as a PDF. New to all this? Start with the first 60 days. Orientation, not medical advice.

Tick the questions to print

All of this cancer's questions start ticked. Untick what does not apply; ticks are kept in this browser. .

Your own questions

Shared with the prep pack, so questions you add there appear here too.

Print or save as PDF

Use (or Ctrl+P, Cmd+P on a Mac). To keep a copy, choose Save as PDF as the destination in the print dialog. Only the sheet prints; the controls stay on screen. Your typed notes print where you typed them; empty fields print as ruled lines to write on.

Appointment sheet

Extragonadal germ cell tumour

Prepared with OnCo (onco.cc/prep/extragonadal-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 browser
What I know so far
What is unclear to me
Changes since last time

My questions

15 on the sheet
Newly diagnosed
  1. 1.What is my exact diagnosis, stage, and grade, and which tests established them?
  2. 2.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?
  3. 3.Which subtype is my cancer, and does that change the recommended treatment?
  4. 4.Is germline (inherited) genetic testing recommended for me or my family?
Seminoma (mediastinal or retroperitoneal)
  1. 5.For my situation (seminoma (mediastinal or retroperitoneal)), which of the standard options do you recommend and why?
  2. 6.Am I a candidate for Bleomycin, Etoposide, Cisplatin, and what side effects should I expect?
Non-seminoma, retroperitoneal
  1. 7.For my situation (non-seminoma, retroperitoneal), which of the standard options do you recommend and why?
  2. 8.Am I a candidate for Bleomycin, Etoposide, Cisplatin, and what side effects should I expect?
Non-seminoma, mediastinal (poor risk)
  1. 9.For my situation (non-seminoma, mediastinal (poor risk)), which of the standard options do you recommend and why?
  2. 10.Am I a candidate for Etoposide, Ifosfamide, Cisplatin, and what side effects should I expect?
Any stage
  1. 11.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)?
  2. 12.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
  3. 13.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
  4. 14.I read that “Cure rates for mediastinal non-seminoma remain well below those of testicular primaries”. How does that affect my plan?
  5. 15.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?

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.
  • 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.

Tests and results to bring

Biomarker results to ask for: Alpha-fetoprotein (AFP), Human chorionic gonadotropin (hCG), Lactate dehydrogenase (LDH), IGCCCG risk group (mediastinal non-seminoma is poor risk), Isochromosome 12p.

Scans and tests linked to this cancer: AFP, hCG and LDH in germ cell tumours (IGCCCG risk groups).

Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.

The treatments I may be offered

  • Seminoma (mediastinal or retroperitoneal): BEP for three cycles or EP for four; radiotherapy only for small retroperitoneal disease; PET to assess residual masses. (Bleomycin, Etoposide, Cisplatin)
  • Non-seminoma, retroperitoneal: BEP for three or four cycles by IGCCCG risk group, then resection of residual masses over one centimetre. (Bleomycin, Etoposide, Cisplatin)
  • Non-seminoma, mediastinal (poor risk): 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. (Etoposide, Ifosfamide, Cisplatin)

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 browser
What I was told
Agreed next steps, dates and who to call