Appointment sheet
Renal medullary carcinoma (SMARCB1-deficient)
Prepared with OnCo (onco.cc/prep/renal-medullary-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
8 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 SMARCB1loss on immunohistochemistry, Sickle cell trait or disease, OCT3/4 expression, Stage at diagnosis), 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 stages
- 5.For my situation (all stages), which of the standard options do you recommend and why?
- 6.Am I a candidate for Cisplatin, Carboplatin, Gemcitabine, 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?
The words I may hear
- Nephrectomy: Removing a kidney (radical) or just the tumour-bearing part of it (partial).
Tests and results to bring
Biomarker results to ask for: SMARCB1 (INI1) loss on immunohistochemistry, Sickle cell trait or disease, OCT3/4 expression, Stage at diagnosis.
Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.
The treatments I may be offered
- All stages: Platinum-based chemotherapy and nephrectomy where possible; no proven targeted or immune therapy; trials where available. (Nephrectomy, Cisplatin, Carboplatin, Gemcitabine)
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