Appointment sheet
Retroperitoneal germ cell tumour
Prepared with OnCo (onco.cc/prep/retroperitoneal-germ-cell-tumour/). 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 Alpha-fetoprotein, beta-hCG and lactate dehydrogenase, Testicular ultrasound for a burned-out primary, Isochromosome 12p), 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 histologies
- 5.For my situation (all histologies), which of the standard options do you recommend and why?
- 6.Am I a candidate for Bleomycin, Etoposide, Cisplatin, 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
- Alpha-fetoprotein (AFP): Alpha-fetoprotein is a protein made by the fetal liver that a substantial share of hepatocellular carcinomas switch back on.
- Tumour markers (CEA, LDH, chromogranin, thyroglobulin): Substances released into the blood by some cancers that can be measured with a simple test, useful for tracking whether treatment is working or the cancer is coming back, but rarely good enough to diagnose or screen.
Tests and results to bring
Biomarker results to ask for: Alpha-fetoprotein, beta-hCG and lactate dehydrogenase, Testicular ultrasound for a burned-out primary, Isochromosome 12p.
Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.
The treatments I may be offered
- All histologies: Treated as the parent: chemotherapy by risk group, resection of residual masses, and testicular ultrasound with orchidectomy where the testis is abnormal. (Extragonadal germ cell tumour, Bleomycin, Etoposide, Cisplatin)
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