Appointment sheet
Localised adrenocortical carcinoma (ENSAT stage I to III, resectable)
Prepared with OnCo (onco.cc/prep/localised-adrenocortical-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
17 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 Weiss score of three or more, Ki-67 index, ENSAT stage and resection status, Hormone profile, Urinary steroid metabolomics), 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?
Diagnosis and staging
- 5.For my situation (diagnosis and staging), which of the standard options do you recommend and why?
Resectable disease
- 6.For my situation (resectable disease), which of the standard options do you recommend and why?
After complete resection, low risk
- 7.For my situation (after complete resection, low risk), which of the standard options do you recommend and why?
- 8.Am I a candidate for Mitotane, and what side effects should I expect?
After resection, high risk
- 9.For my situation (after resection, high risk), which of the standard options do you recommend and why?
- 10.Am I a candidate for Mitotane, Etoposide, Cisplatin, and what side effects should I expect?
Local recurrence
- 11.For my situation (local recurrence), which of the standard options do you recommend and why?
- 12.Am I a candidate for Mitotane, and what side effects should I expect?
Any stage
- 13.Are there clinical trials I could join, for example of Mitotane, Cisplatin, Etoposide?
- 14.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
- 15.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
- 16.I read that “Whether adjuvant chemotherapy adds to mitotane in high-risk disease awaits ADIUVO-2”. How does that affect my plan?
- 17.I read that “Mitotane is slow to reach therapeutic levels and causes neurological and gastrointestinal toxicity in many patients”. How does that affect my plan?
The words I may hear
- Adrenalectomy: Removing an adrenal gland.
- Germline vs somatic mutations: Germline mutations are inherited and in every cell; somatic mutations arise in the tumour only.
- Disease-specific staging and risk systems (FIGO, Ann Arbor, IPI, R-ISS, ELN, IMDC): Beyond the generic TNM system, gynaecological cancers (FIGO), lymphoma (Ann Arbor, IPI), myeloma (R-ISS), AML (ELN), kidney cancer (IMDC), neuroblastoma (INRG) and CLL (Rai, Binet) each have their own system that combines stage, blood tests, genetics and fitness into risk groups.
- Lymphadenectomy (lymph node dissection): Surgically removing the lymph nodes that drain a tumour, both to stage the cancer and to clear any spread.
Tests and results to bring
Diagnosis and staging: Hormone work-up, contrast CT or MRI of the adrenal, chest CT and FDG-PET; no biopsy of a resectable adrenal mass; germline testing.
Biomarker results to ask for: Weiss score of three or more (malignancy), Ki-67 index (10 and 20 percent thresholds for risk), ENSAT stage and resection status, Hormone profile (cortisol, DHEAS, androgens, aldosterone, steroid precursors), Urinary steroid metabolomics (diagnosis, emerging), Germline TP53 in all children; Lynch syndrome testing in adults, Plasma mitotane level (14 to 20 mg/L target).
Scans and tests linked to this cancer: CT (computed tomography), FDG PET, Germline (hereditary) testing, MRI.
Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.
The treatments I may be offered
- Resectable disease: Open adrenalectomy with en bloc resection of adherent structures and locoregional lymphadenectomy by an experienced surgeon; laparoscopic surgery only for small tumours; perioperative hydrocortisone for cortisol-secreting tumours. (Adrenalectomy, Lymphadenectomy (lymph node dissection), Robotic & minimally invasive surgery)
- After complete resection, low risk: Observation with imaging every three months (ADIUVO showed no benefit from mitotane). (Mitotane, CT (computed tomography))
- After resection, high risk: Adjuvant mitotane titrated to 14 to 20 mg/L for at least two years with glucocorticoid replacement; tumour-bed radiotherapy after incomplete resection; platinum-based chemotherapy considered for very high-risk tumours (ADIUVO-2). (Mitotane, IMRT / IGRT (modern external beam), Etoposide, Cisplatin)
- Local recurrence: Repeat resection when feasible after a disease-free interval of a year or more, with mitotane; ablation or radiotherapy for small unresectable recurrences. (Adrenalectomy, Thermal ablation (RFA, microwave, cryo), SBRT / SABR (stereotactic radiotherapy), Mitotane)
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