Appointment sheet
Papillary tumour of the pineal region
Prepared with OnCo (onco.cc/prep/papillary-tumour-pineal-region/). 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
7 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 Loss of chromosome 10, DNA methylation class distinguishing it from ependymoma and pineal parenchymal tumours, SPDEF and cytokeratin expression, Extent of resection), 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?
All cases
- 5.For my situation (all cases), which of the standard options do you recommend and why?
Any stage
- 6.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
- 7.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
Tests and results to bring
Biomarker results to ask for: Loss of chromosome 10 (all cases examined), DNA methylation class distinguishing it from ependymoma and pineal parenchymal tumours, SPDEF and cytokeratin expression, Extent of resection.
Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.
The treatments I may be offered
- All cases: Gross total resection where possible, with adjuvant radiotherapy commonly given for the recurrence risk; chemotherapy has no established role. (Brain and spinal cord tumours (all types), Ependymoma)
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