Tick the questions to print

All of this cancer's questions start ticked. Untick what does not apply; ticks are kept in this browser. .

Newly diagnosed: What is my exact diagnosis, stage, and grade, and which tests established them?

Newly diagnosed: Which biomarkers have been tested on my tumour (for example DNA methylation subgroup, DICER1, DROSHA and DGCR8 alterations; germline DICER1 testing, RB1 status, Spinal MRI and cerebrospinal fluid cytology), and what were the results?

Newly diagnosed: Which subtype is my cancer, and does that change the recommended treatment?

Newly diagnosed: Is germline (inherited) genetic testing recommended for me or my family?

All cases: For my situation (all cases), which of the standard options do you recommend and why?

All cases: Am I a candidate for Cisplatin, Carboplatin, Vincristine, and what side effects should I expect?

Any stage: Would a second opinion at a high-volume centre change anything, and can you help arrange it?

Any stage: What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?

Appointment sheet

Pineoblastoma

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

8 on the sheet

Newly 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 DNA methylation subgroup, DICER1, DROSHA and DGCR8 alterations; germline DICER1 testing, RB1 status, Spinal MRI and cerebrospinal fluid cytology), 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?
6.Am I a candidate for Cisplatin, Carboplatin, Vincristine, and what side effects should I expect?

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: DNA methylation subgroup, DICER1, DROSHA and DGCR8 alterations; germline DICER1 testing, RB1 status, Spinal MRI and cerebrospinal fluid cytology.

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, craniospinal irradiation with boost in older children, platinum-based chemotherapy; high-dose chemotherapy with stem cell rescue to spare radiotherapy in infants, as on the CNS embryonal tumour summary. (Brain and spinal cord tumours (all types), Medulloblastoma, Cisplatin, Carboplatin, Vincristine)

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

Tick the questions to print