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
Saved in this browserWhat I know so far
What is unclear to me
Changes since last time
My questions
9 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 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?
The words I may hear
- Neurofibromatosis type 1: Neurofibromatosis type 1 is an inherited condition, affecting about one in 2,000 to 2,500 babies, that causes nerve tumours called neurofibromas and raises the risk of some cancers.
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
Saved in this browserWhat I was told
Agreed next steps, dates and who to call