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Living with cancer· Appointment prep

Appointment sheet: Atypical teratoid/rhabdoid tumour (ATRT)

One page to bring and write on: your details, the questions for Atypical teratoid/rhabdoid tumour (ATRT) 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

Atypical teratoid/rhabdoid tumour (ATRT)

Prepared with OnCo (onco.cc/prep/atrt/). 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

14 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 Loss of SMARCB1nuclear staining by immunohistochemistry, SMARCB1 or SMARCA4 sequencing, somatic and germline, Methylation subgroup, Metastatic stage on MRI and cerebrospinal-fluid cytology, Age), 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?
Newly diagnosed, any age
  1. 5.For my situation (newly diagnosed, any age), which of the standard options do you recommend and why?
  2. 6.Am I a candidate for Methotrexate, Cyclophosphamide, Cisplatin or related drugs, and what side effects should I expect?
Germline SMARCB1 or SMARCA4 alteration
  1. 7.For my situation (germline smarcb1 or smarca4 alteration), which of the standard options do you recommend and why?
Relapsed or refractory
  1. 8.For my situation (relapsed or refractory), which of the standard options do you recommend and why?
  2. 9.Am I a candidate for Tazemetostat, and what side effects should I expect?
Any stage
  1. 10.Are there clinical trials I could join, for example of DNA methylation profiling, Proton therapy, NCI-COG Pediatric MATCH (APEC1621)?
  2. 11.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
  3. 12.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
  4. 13.I read that “Infants too young for radiotherapy and children with metastatic or ATRT-MYC disease still do poorly; SIOPE ATRT01 and COG successors are testing intensified and subgroup-directed therapy”. How does that affect my plan?
  5. 14.I read that “Long-term neurocognitive and endocrine cost of intensive therapy in the first years of life; proton therapy and radiation-sparing arms aim to reduce it”. How does that affect my plan?

The words I may hear

Tests and results to bring

Newly diagnosed, any age: Maximal safe resection followed by an intensive multimodal protocol: ACNS0333-style induction, high-dose chemotherapy with autologous stem-cell rescue, and age-adapted focal radiotherapy; or the EU-RHAB regimen with intraventricular methotrexate. Enrolment in SIOPE ATRT01 or a COG successor where available.

Biomarker results to ask for: Loss of SMARCB1 (INI1) nuclear staining by immunohistochemistry, SMARCB1 or SMARCA4 sequencing, somatic and germline, Methylation subgroup (TYR, SHH, MYC), Metastatic stage on MRI and cerebrospinal-fluid cytology, Age (radiotherapy eligibility), Extent of resection.

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

  • Germline SMARCB1 or SMARCA4 alteration: Genetic counselling and testing of parents and siblings; surveillance imaging for synchronous or second rhabdoid tumours in the kidney and soft tissue. (Germline (hereditary) testing)
  • Relapsed or refractory: No standard; EZH2 inhibition with tazemetostat was explored in trials and compassionate use until the drug was withdrawn from all markets in March 2026; aurora kinase A inhibition, re-irradiation where feasible; early palliative care. (Tazemetostat, Early integrated palliative care)

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