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 browserWhat I know so far
What is unclear to me
Changes since last time
My questions
17 on the sheetNewly diagnosed
- 1.What is my exact diagnosis, stage, and grade, and which tests established them?
- 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.Which subtype is my cancer, and does that change the recommended treatment?
- 4.Is germline (inherited) genetic testing recommended for me or my family?
Non-metastatic, standard therapy
- 5.For my situation (non-metastatic, standard therapy), which of the standard options do you recommend and why?
- 6.Am I a candidate for Cisplatin, Vincristine, Cyclophosphamide or related drugs, and what side effects should I expect?
Non-metastatic, de-escalation trials
- 7.For my situation (non-metastatic, de-escalation trials), which of the standard options do you recommend and why?
- 8.Am I a candidate for Cisplatin, Vincristine, Cyclophosphamide, and what side effects should I expect?
- 9.How do the results of ACNS1422 and SJMB12 apply to someone like me?
Metastatic or residual disease
- 10.For my situation (metastatic or residual disease), which of the standard options do you recommend and why?
- 11.Am I a candidate for Carboplatin, Cisplatin, Cyclophosphamide or related drugs, and what side effects should I expect?
Survivorship
- 12.For my situation (survivorship), which of the standard options do you recommend and why?
Any stage
- 13.Are there clinical trials I could join, for example of Proton therapy, DNA methylation profiling, Germline (hereditary) testing?
- 14.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
- 15.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
- 16.I read that “How far craniospinal radiotherapy can be reduced without losing cures”. How does that affect my plan?
- 17.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
- Non-metastatic, standard therapy: Maximal safe resection, 23.4 Gy craniospinal radiotherapy with tumour-bed boost (protons where available), then cisplatin, vincristine and cyclophosphamide or lomustine. (Proton therapy, IMRT / IGRT (modern external beam), Cisplatin, Vincristine, Cyclophosphamide, Lomustine (CCNU), DNA methylation profiling)
- Non-metastatic, de-escalation trials: 15 Gy (SJMB12) or 18 Gy (ACNS1422) craniospinal radiotherapy with reduced boost and fewer chemotherapy cycles, judged against historical survival. (Proton therapy, Cisplatin, Vincristine, Cyclophosphamide, DNA methylation profiling, St. Jude Children's Research Hospital, Children's Oncology Group (COG), ACNS1422, SJMB12)
- Metastatic or residual disease: High-risk therapy: 36 Gy craniospinal radiotherapy with boost and intensified chemotherapy, as for other groups. (Carboplatin, Cisplatin, Cyclophosphamide, Vincristine, IMRT / IGRT (modern external beam))
- Survivorship: Neurocognitive, audiological, endocrine and second-tumour follow-up for life. (Late effects and survivorship toxicity, Survivorship care and late-effects surveillance)
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 browserWhat I was told
Agreed next steps, dates and who to call