Appointment sheet
Corticotroph pituitary neuroendocrine tumour (Cushing disease and silent corticotroph tumour)
Prepared with OnCo (onco.cc/prep/corticotroph-pitnet/). 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
9 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 Late-night salivary cortisol, urinary free cortisol, dexamethasone suppression, plasma ACTH, TPIT lineage and ACTH immunostaining; Crooke hyaline change, Inferior petrosal sinus sampling when MRI is negative, Ki-67 and USP8 mutation), 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?
Cushing disease, first line
- 5.For my situation (cushing disease, first line), which of the standard options do you recommend and why?
Persistent or recurrent
- 6.For my situation (persistent or recurrent), which of the standard options do you recommend and why?
- 7.Am I a candidate for Osilodrostat, Pasireotide, Cabergoline or related drugs, and what side effects should I expect?
Any stage
- 8.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
- 9.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
Tests and results to bring
Biomarker results to ask for: Late-night salivary cortisol, urinary free cortisol, dexamethasone suppression, plasma ACTH, TPIT lineage and ACTH immunostaining; Crooke hyaline change, Inferior petrosal sinus sampling when MRI is negative, Ki-67 and USP8 mutation (functioning microadenomas).
Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.
The treatments I may be offered
- Cushing disease, first line: Transsphenoidal selective adenomectomy. (Pituitary tumours (pituitary neuroendocrine tumours) and pituitary carcinoma)
- Persistent or recurrent: Repeat surgery, radiotherapy, osilodrostat or other cortisol-directed drugs, pasireotide or cabergoline, or bilateral adrenalectomy; temozolomide for aggressive tumours. (Osilodrostat, Pasireotide, Cabergoline, Stereotactic radiosurgery (Gamma Knife, CyberKnife, linac SRS), Temozolomide, Mifepristone)
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