Appointment sheet
Succinate dehydrogenase-deficient renal cell carcinoma
Prepared with OnCo (onco.cc/prep/sdh-deficient-renal-cell-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
6 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 Loss of SDHB immunohistochemistry, Germline SDHBmutation, Flocculent cytoplasmic inclusions and entrapped tubules, WHO/ISUP grade), and what were the results?
- 3.Is germline (inherited) genetic testing recommended for me or my family?
All stages
- 4.For my situation (all stages), which of the standard options do you recommend and why?
Any stage
- 5.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
- 6.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).
- Hereditary cancer syndromes: About 5-10% of cancers arise from an inherited gene fault.
Tests and results to bring
Biomarker results to ask for: Loss of SDHB immunohistochemistry, Germline SDHB (or SDHC, SDHA, SDHD) mutation, Flocculent cytoplasmic inclusions and entrapped tubules, WHO/ISUP grade (usually 2).
Scans and tests linked to this cancer: Germline (hereditary) testing.
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: Surgery with long follow-up; germline SDH testing and paraganglioma surveillance for patient and relatives; advanced disease on the renal cell carcinoma page. (Renal cell carcinoma, Germline (hereditary) testing, Nephrectomy, Hereditary pheochromocytoma and paraganglioma (SDHx, VHL, RET, NF1, MAX and TMEM127))
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