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Living with cancer· Appointment prep

Appointment sheet: Central nervous system germ cell tumours (germinoma and non-germinomatous)

One page to bring and write on: your details, the questions for Central nervous system germ cell tumours (germinoma and non-germinomatous) 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

Central nervous system germ cell tumours (germinoma and non-germinomatous)

Prepared with OnCo (onco.cc/prep/cns-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

17 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 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?
  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?
Localised germinoma
  1. 5.For my situation (localised germinoma), which of the standard options do you recommend and why?
  2. 6.Am I a candidate for Carboplatin, Etoposide, Ifosfamide, and what side effects should I expect?
Disseminated germinoma
  1. 7.For my situation (disseminated germinoma), which of the standard options do you recommend and why?
Non-germinomatous germ cell tumour
  1. 8.For my situation (non-germinomatous germ cell tumour), which of the standard options do you recommend and why?
  2. 9.Am I a candidate for Cisplatin, Carboplatin, Etoposide or related drugs, and what side effects should I expect?
Teratoma
  1. 10.For my situation (teratoma), which of the standard options do you recommend and why?
Relapse
  1. 11.For my situation (relapse), which of the standard options do you recommend and why?
  2. 12.Am I a candidate for Thiotepa, and what side effects should I expect?
Any stage
  1. 13.Are there clinical trials I could join, for example of Proton therapy, Autologous stem cell transplant (high-dose therapy)?
  2. 14.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
  3. 15.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
  4. 16.I read that “Which non-germinomatous patients can safely avoid craniospinal irradiation”. How does that affect my plan?
  5. 17.I read that “Late endocrine, cognitive and vascular effects of radiotherapy in survivors treated as teenagers”. How does that affect my plan?

The words I may hear

  • 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.

Tests and results to bring

Biomarker results to ask for: 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.

Scans and tests linked to this cancer: MRI.

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