Appointment sheet
Choroid plexus carcinoma
Prepared with OnCo (onco.cc/prep/choroid-plexus-carcinoma/). 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 Germline TP53 mutation, Mitotic count, necrosis and brain invasion, Extent of resection, Hydrocephalus at presentation), and what were the results?
- 3.Is germline (inherited) genetic testing recommended for me or my family?
All cases
- 4.For my situation (all cases), which of the standard options do you recommend and why?
- 5.Am I a candidate for Cisplatin, Etoposide, and what side effects should I expect?
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?
The words I may hear
- 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.
Tests and results to bring
Biomarker results to ask for: Germline TP53 mutation (Li-Fraumeni syndrome), Mitotic count, necrosis and brain invasion (grade 3 criteria), Extent of resection, Hydrocephalus at presentation.
Scans and tests linked to this cancer: Germline (hereditary) testing.
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: Maximal safe resection, staged after chemotherapy where the tumour is too vascular; platinum- and etoposide-based chemotherapy; radiotherapy for older children and residual disease; germline TP53 testing. (Brain and spinal cord tumours (all types), Cisplatin, Etoposide, Germline (hereditary) testing, Li-Fraumeni syndrome (germline TP53))
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