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Living with cancer· Appointment prep

Appointment sheet: WNT-activated medulloblastoma

One page to bring and write on: your details, the questions for WNT-activated 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

WNT-activated medulloblastoma

Prepared with OnCo (onco.cc/prep/medulloblastoma-wnt/). 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 Nuclear beta-catenin immunohistochemistry, CTNNB1 exon 3 mutation, Monosomy 6, DNA methylation profiling, APC germline testing), 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?
Non-metastatic, standard therapy
  1. 5.For my situation (non-metastatic, standard therapy), 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?
Non-metastatic, de-escalation trials
  1. 7.For my situation (non-metastatic, de-escalation trials), which of the standard options do you recommend and why?
  2. 8.Am I a candidate for Cisplatin, Vincristine, Cyclophosphamide, and what side effects should I expect?
Metastatic or residual disease
  1. 9.For my situation (metastatic or residual disease), which of the standard options do you recommend and why?
  2. 10.Am I a candidate for Carboplatin, Cisplatin, Cyclophosphamide or related drugs, and what side effects should I expect?
Survivorship
  1. 11.For my situation (survivorship), which of the standard options do you recommend and why?
Any stage
  1. 12.Are there clinical trials I could join, for example of Proton therapy, DNA methylation profiling, Germline (hereditary) testing?
  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 “How far craniospinal radiotherapy can be reduced without losing cures”. How does that affect my plan?
  5. 16.I read that “Whether adult and metastatic WNT tumours share the childhood prognosis”. How does that affect my plan?

The words I may hear

  • Medulloblastoma molecular groups (WNT, SHH, group 3, group 4): Medulloblastoma is four diseases under one microscope: the WNT group is almost always cured, the SHH group depends on age and TP53, and groups 3 and 4 carry most of the deaths, so the group now steers how much radiation and chemotherapy a child receives.
  • 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: Nuclear beta-catenin immunohistochemistry, CTNNB1 exon 3 mutation, Monosomy 6, DNA methylation profiling, APC germline testing, Spinal MRI and CSF cytology staging.

Scans and tests linked to this cancer: Germline (hereditary) testing, 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