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Living with cancer· Appointment prep

Appointment sheet: SHH-activated medulloblastoma

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

SHH-activated medulloblastoma

Prepared with OnCo (onco.cc/prep/medulloblastoma-shh/). 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

18 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 GAB1, YAP1 and filamin A immunohistochemistry for SHH, PTCH1, SUFU and SMO mutations, TP53 mutation, somatic and germline, GLI2 and MYCN amplification, DNA methylation subtype), 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?
Infants under three, TP53-wildtype
  1. 5.For my situation (infants under three, tp53-wildtype), which of the standard options do you recommend and why?
  2. 6.Am I a candidate for Cyclophosphamide, Vincristine, Methotrexate or related drugs, and what side effects should I expect?
Children over three and adults, TP53-wildtype
  1. 7.For my situation (children over three and adults, tp53-wildtype), which of the standard options do you recommend and why?
  2. 8.Am I a candidate for Cisplatin, Vincristine, Cyclophosphamide or related drugs, and what side effects should I expect?
TP53-mutant
  1. 9.For my situation (tp53-mutant), which of the standard options do you recommend and why?
  2. 10.Am I a candidate for Carboplatin, Cisplatin, Vincristine or related drugs, and what side effects should I expect?
Relapsed, skeletally mature, upstream PTCH1 or SMO lesion
  1. 11.For my situation (relapsed, skeletally mature, upstream ptch1 or smo lesion), which of the standard options do you recommend and why?
  2. 12.Am I a candidate for Vismodegib, Sonidegib, Temozolomide, and what side effects should I expect?
Survivorship
  1. 13.For my situation (survivorship), which of the standard options do you recommend and why?
Any stage
  1. 14.Are there clinical trials I could join, for example of Vismodegib, Sonidegib, DNA methylation profiling, Proton therapy?
  2. 15.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
  3. 16.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
  4. 17.I read that “No therapy improves TP53-mutant SHH medulloblastoma”. How does that affect my plan?
  5. 18.I read that “Smoothened inhibitors fuse growth plates and fail against downstream activation”. How does that affect my plan?

The words I may hear

  • Secondary malignancy (therapy-related cancer): A new, different cancer caused by the treatment of the first one: leukaemia after alkylating chemotherapy or PARP inhibitors, solid tumours in irradiated tissue decades later, and rarely T-cell lymphoma after CAR-T.
  • 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.
  • 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.
  • 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: GAB1, YAP1 and filamin A immunohistochemistry for SHH, PTCH1, SUFU and SMO mutations, TP53 mutation, somatic and germline, GLI2 and MYCN amplification, DNA methylation subtype (SHH infant, child, adult), Germline PTCH1, SUFU and TP53 testing, Chromosome 9q loss.

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