Appointment sheet
Collecting duct carcinoma of the kidney
Prepared with OnCo (onco.cc/prep/collecting-duct-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 Retained SMARCB1expression, distinguishing it from renal medullary carcinoma, High nuclear grade and lymphovascular invasion, 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 Gemcitabine + cisplatin, Carboplatin, 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: Retained SMARCB1 (INI1) expression, distinguishing it from renal medullary carcinoma, High nuclear grade and lymphovascular invasion, Stage at diagnosis (three quarters III or IV).
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: Nephrectomy where resectable; gemcitabine with cisplatin or carboplatin for metastatic disease, borrowed from urothelial cancer; renal cell carcinoma drugs have little evidence here. (Nephrectomy, Gemcitabine + cisplatin, Carboplatin, Renal cell carcinoma)
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