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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 Quantitative visual acuity, NF1 germline status, KIAA1549-BRAF fusion or BRAF V600E in sporadic tumours, MRI of the optic pathway and hypothalamus), 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?

Stable vision: For my situation (stable vision), which of the standard options do you recommend and why?

Threatened vision or progression: For my situation (threatened vision or progression), which of the standard options do you recommend and why?

Threatened vision or progression: Am I a candidate for Carboplatin, Vincristine, Selumetinib or related drugs, 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

Optic pathway glioma

Prepared with OnCo (onco.cc/prep/optic-pathway-glioma/). 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

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What I know so far

What is unclear to me

Changes since last time

My questions

9 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 Quantitative visual acuity, NF1 germline status, KIAA1549-BRAF fusion or BRAF V600E in sporadic tumours, MRI of the optic pathway and hypothalamus), 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?

Stable vision

5.For my situation (stable vision), which of the standard options do you recommend and why?

Threatened vision or progression

6.For my situation (threatened vision or progression), which of the standard options do you recommend and why?
7.Am I a candidate for Carboplatin, Vincristine, Selumetinib or related drugs, and what side effects should I expect?

Any stage

8.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
9.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: Quantitative visual acuity (Teller cards, HOTV), NF1 germline status, KIAA1549-BRAF fusion or BRAF V600E in sporadic tumours, MRI of the optic pathway and hypothalamus.

Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.

The treatments I may be offered

Stable vision: Observation with ophthalmology and MRI follow-up. (Paediatric low-grade glioma)
Threatened vision or progression: Carboplatin and vincristine, or selumetinib (phase 2, Fangusaro 2019), tovorafenib, or dabrafenib with trametinib for BRAF V600E; radiotherapy deferred. (Carboplatin, Vincristine, Selumetinib, Tovorafenib, Dabrafenib, Trametinib)

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

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What I was told

Agreed next steps, dates and who to call

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