Appointment sheet
Fumarate hydratase-deficient renal cell carcinoma (HLRCC-associated)
Prepared with OnCo (onco.cc/prep/fh-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
7 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 FH loss and 2-succinocysteine positivity on immunohistochemistry, Germline FH mutation, Cutaneous and uterine leiomyomas in the patient or family, High nuclear grade with prominent eosinophilic nucleoli), 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?
Any stage
- 6.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
- 7.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: FH loss and 2-succinocysteine positivity on immunohistochemistry, Germline FH mutation (HLRCC), Cutaneous and uterine leiomyomas in the patient or family, High nuclear grade with prominent eosinophilic nucleoli.
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: Early complete surgery; germline FH testing for the patient and relatives; advanced disease on the renal cell carcinoma page's pathways without a dedicated standard. (Renal cell carcinoma, Papillary renal cell carcinoma, Germline (hereditary) testing, Nephrectomy)
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