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Living with cancer· Appointment prep

Appointment sheet: Germ cell tumours of childhood and adolescence (extracranial and CNS)

One page to bring and write on: your details, the questions for Germ cell tumours of childhood and adolescence (extracranial and CNS) 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

Germ cell tumours of childhood and adolescence (extracranial and CNS)

Prepared with OnCo (onco.cc/prep/paediatric-germ-cell-tumours/). 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

16 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 Serum and cerebrospinal-fluid AFP, Serum and cerebrospinal-fluid beta-hCG, Lactate dehydrogenase, Isochromosome 12p, MaGIC risk group), 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?
Low-risk malignant extracranial GCT (e.g. stage I testicular, stage I ovarian)
  1. 5.For my situation (low-risk malignant extracranial gct (e.g. stage i testicular, stage i ovarian)), which of the standard options do you recommend and why?
Standard- and high-risk malignant extracranial GCT
  1. 6.For my situation (standard- and high-risk malignant extracranial gct), which of the standard options do you recommend and why?
  2. 7.Am I a candidate for Cisplatin, Carboplatin, Etoposide or related drugs, and what side effects should I expect?
CNS germinoma
  1. 8.For my situation (cns germinoma), which of the standard options do you recommend and why?
  2. 9.Am I a candidate for Carboplatin, Etoposide, and what side effects should I expect?
CNS non-germinomatous GCT
  1. 10.For my situation (cns non-germinomatous gct), which of the standard options do you recommend and why?
  2. 11.Am I a candidate for Cisplatin, Ifosfamide, Etoposide, and what side effects should I expect?
Any stage
  1. 12.Are there clinical trials I could join, for example of Sodium thiosulfate (otoprotectant), Active surveillance, Oncofertility and fertility preservation, Proton therapy?
  2. 13.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
  3. 14.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
  4. 15.I read that “Whether carboplatin can fully replace cisplatin without losing cures in standard-risk disease; AGCT1531 is the answer trial”. How does that affect my plan?
  5. 16.I read that “Relapsed and platinum-refractory disease, especially mediastinal and CNS non-germinomatous tumours, where high-dose chemotherapy is the only option”. How does that affect my plan?

The words I may hear

  • Alpha-fetoprotein (AFP): Alpha-fetoprotein is a protein made by the fetal liver that a substantial share of hepatocellular carcinomas switch back on.
  • Retroperitoneum: The space at the back of the abdomen, behind the gut's lining, holding the kidneys, adrenals, pancreas, aorta and the para-aortic lymph nodes.
  • 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.
  • Adolescent and young adult (AYA) oncology: Cancer in people aged 15-39, about 90,000 US cases a year, with a distinct mix of cancers, slower survival improvement than children or older adults, and specific needs: fertility, education and work, psychosocial support and trial access.

Tests and results to bring

Biomarker results to ask for: Serum and cerebrospinal-fluid AFP, Serum and cerebrospinal-fluid beta-hCG, Lactate dehydrogenase, Isochromosome 12p (adolescent tumours), MaGIC risk group (site, stage, age, marker level), Audiometry before and after cisplatin, Fertility assessment and preservation.

Scans and tests linked to this cancer: Active surveillance, 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

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