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Living with cancer· Appointment prep

Appointment sheet: Medulloblastoma

One page to bring and write on: your details, the questions for Medulloblastoma 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

Medulloblastoma

Prepared with OnCo (onco.cc/prep/medulloblastoma/). 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 Molecular subgroup, MYC / MYCN amplification, TP53 mutation, Metastatic stageby MRI and CSF cytology, Extent of resection), 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?
Average risk (≥3 years, M0, <1.5 cm² residual, no MYC amp)
  1. 5.For my situation (average risk (≥3 years, m0, <1.5 cm² residual, no myc amp)), which of the standard options do you recommend and why?
  2. 6.Am I a candidate for Cisplatin, Vincristine, Cyclophosphamide or related drugs, and what side effects should I expect?
High risk (metastatic, residual, anaplastic, MYC)
  1. 7.For my situation (high risk (metastatic, residual, anaplastic, myc)), which of the standard options do you recommend and why?
  2. 8.Am I a candidate for Carboplatin, Cisplatin, Cyclophosphamide, and what side effects should I expect?
Infants (<3 years)
  1. 9.For my situation (infants (<3 years)), which of the standard options do you recommend and why?
  2. 10.Am I a candidate for Methotrexate, Cyclophosphamide, and what side effects should I expect?
Relapsed
  1. 11.For my situation (relapsed), which of the standard options do you recommend and why?
  2. 12.Am I a candidate for Temozolomide, Irinotecan (and liposomal irinotecan), Bevacizumab or related drugs, and what side effects should I expect?
Any stage
  1. 13.Are there clinical trials I could join, for example of Proton therapy, Vismodegib, DNA methylation profiling?
  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 “Group 3 MYC-amplified and SHH TP53-mutant tumours: survival under 50%”. How does that affect my plan?
  5. 17.I read that “Relapse after craniospinal irradiation is rarely curable; it is where new approaches are most needed”. How does that affect my plan?

The words I may hear

  • Blood-brain barrier (BBB): The tight seal around brain blood vessels that keeps most drugs out, one of the two main reasons brain cancer is so hard to treat.
  • Li-Fraumeni syndrome (germline TP53): Li-Fraumeni syndrome is an inherited fault in the TP53 gene giving a lifetime cancer risk near 100% in women and ~75% in men, with sarcomas, breast cancer, brain tumours, adrenal cancer and leukaemias often in childhood.

Tests and results to bring

Biomarker results to ask for: Molecular subgroup (methylation profiling; IHC surrogates β-catenin, GAB1, YAP1), MYC / MYCN amplification, TP53 mutation (SHH), Metastatic stage (Chang M0-M4) by MRI and CSF cytology, Extent of resection (residual >1.5 cm²), Histology (desmoplastic/nodular, large cell/anaplastic), Germline testing (SUFU, PTCH1, TP53, BRCA2, PALB2, APC).

Scans and tests linked to this cancer: MRI, DNA methylation profiling.

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