Appointment sheet
Hyperparathyroidism-jaw tumour syndrome (CDC73-related parathyroid carcinoma)
Prepared with OnCo (onco.cc/prep/hyperparathyroidism-jaw-tumour-syndrome/). 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 Germline CDC73 mutation, Loss of nuclear parafibromin on immunohistochemistry, Calcium and parathyroid hormone, Jaw and renal imaging), 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?
Hyperparathyroidism and carcinoma
- 5.For my situation (hyperparathyroidism and carcinoma), which of the standard options do you recommend and why?
- 6.Am I a candidate for Cinacalcet, 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
- Hereditary cancer syndromes: About 5-10% of cancers arise from an inherited gene fault.
Tests and results to bring
Biomarker results to ask for: Germline CDC73 mutation, Loss of nuclear parafibromin on immunohistochemistry, Calcium and parathyroid hormone, Jaw and renal imaging.
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
- Hyperparathyroidism and carcinoma: Parathyroid surgery for hyperparathyroidism; carcinoma treated as the parent page describes, with cinacalcet for uncontrolled calcium and CDC73 testing of relatives. (Parathyroid carcinoma, Cinacalcet, Germline (hereditary) testing)
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