Appointment sheet
Pineocytoma and pineal parenchymal tumour of intermediate differentiation
Prepared with OnCo (onco.cc/prep/pineal-parenchymal-tumours/). 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
8 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 KBTBD4 in-frame insertion, MIB-1labelling index, DNA methylation class, Spinal MRI and cerebrospinal fluid cytology for seeding), 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?
Pineocytoma
- 5.For my situation (pineocytoma), which of the standard options do you recommend and why?
Intermediate differentiation
- 6.For my situation (intermediate differentiation), which of the standard options do you recommend and why?
Any stage
- 7.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
- 8.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: KBTBD4 in-frame insertion, MIB-1 (Ki-67) labelling index, DNA methylation class, Spinal MRI and cerebrospinal fluid cytology for seeding.
Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.
The treatments I may be offered
- Intermediate differentiation: Resection followed by radiotherapy, focal or craniospinal by grade and staging; chemotherapy for recurrence. (Brain and spinal cord tumours (all types), Pineoblastoma)
- Pineocytoma: Complete resection alone. (Brain and spinal cord tumours (all types))
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