Appointment sheet
Retinoblastoma
Prepared with OnCo (onco.cc/prep/retinoblastoma/). 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
16 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 RB1 testing, IIRC group A-E and TNMH stage, High-risk pathology after enucleation, Aqueous humour cfDNA, MYCN amplification), 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?
Advanced unilateral (group E, no vision potential)
- 5.For my situation (advanced unilateral (group e, no vision potential)), which of the standard options do you recommend and why?
- 6.Am I a candidate for Vincristine, Etoposide, Carboplatin, and what side effects should I expect?
Eye-salvage (groups B-D, bilateral)
- 7.For my situation (eye-salvage (groups b-d, bilateral)), which of the standard options do you recommend and why?
- 8.Am I a candidate for Melphalan (including hepatic delivery system), Carboplatin, Etoposide or related drugs, and what side effects should I expect?
Extraocular / metastatic
- 9.For my situation (extraocular / metastatic), which of the standard options do you recommend and why?
- 10.Am I a candidate for Cyclophosphamide, Carboplatin, Etoposide, and what side effects should I expect?
Surveillance and genetics
- 11.For my situation (surveillance and genetics), which of the standard options do you recommend and why?
Any stage
- 12.Are there clinical trials I could join, for example of Melphalan (including hepatic delivery system), Liquid biopsy (ctDNA)?
- 13.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
- 14.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
- 15.I read that “Late diagnosis in low-income countries; paediatric ophthalmology access is the lever”. How does that affect my plan?
- 16.I read that “Second primary cancers in RB1 carriers across life”. How does that affect my plan?
The words I may hear
- Somatic mutation theory of cancer: The standard account: cancer begins when a single body cell picks up mutations in the genes that control growth, and its descendants inherit them.
- Germline vs somatic mutations: Germline mutations are inherited and in every cell; somatic mutations arise in the tumour only.
- Hereditary cancer syndromes: About 5-10% of cancers arise from an inherited gene fault.
Tests and results to bring
Biomarker results to ask for: Germline RB1 testing (proband and family), IIRC group A-E and TNMH stage, High-risk pathology after enucleation (massive choroidal invasion, post-laminar optic nerve, scleral invasion), Aqueous humour cfDNA (6p gain, RB1 status), MYCN amplification, MRI of brain for pineal/optic nerve involvement.
Scans and tests linked to this cancer: Germline (hereditary) testing, Liquid biopsy (ctDNA), MRI.
Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.
The treatments I may be offered
- Extraocular / metastatic: Intensive multi-agent chemotherapy with autologous stem-cell rescue; radiotherapy to orbit; CNS disease is the hardest to cure. (Cyclophosphamide, Carboplatin, Etoposide, Autologous stem cell transplant (high-dose therapy), IMRT / IGRT (modern external beam))
- Advanced unilateral (group E, no vision potential): Primary enucleation with long optic nerve segment; adjuvant chemotherapy (VEC) for high-risk pathology; orbital implant. (Vincristine, Etoposide, Carboplatin)
- Eye-salvage (groups B-D, bilateral): Intra-arterial melphalan (± topotecan, carboplatin) via ophthalmic artery, or systemic chemoreduction (vincristine, etoposide, carboplatin) with consolidating laser, cryotherapy or plaque brachytherapy; intravitreal melphalan for vitreous seeds. (Melphalan (including hepatic delivery system), Carboplatin, Etoposide, Vincristine, Topotecan, Brachytherapy)
- Surveillance and genetics: Serial examinations under anaesthesia until ~7 years; germline RB1 testing; screening of at-risk relatives from birth; lifelong second-cancer awareness in carriers. (Germline (hereditary) testing)
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