Appointment sheet
Gonadotroph pituitary neuroendocrine tumour (non-functioning adenoma)
Prepared with OnCo (onco.cc/prep/gonadotroph-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 SF1, GATA3 and oestrogen receptor alpha lineage markers; FSH and LH immunostaining, Visual fields and optic chiasm contact on MRI, Anterior pituitary hormone panel for hypopituitarism, Ki-67 and invasion), 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?
Incidental, away from the chiasm
- 5.For my situation (incidental, away from the chiasm), which of the standard options do you recommend and why?
Visual compromise, growth or recurrence
- 6.For my situation (visual compromise, growth or recurrence), which of the standard options do you recommend and why?
- 7.Am I a candidate for Temozolomide, 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: SF1, GATA3 and oestrogen receptor alpha lineage markers; FSH and LH immunostaining, Visual fields and optic chiasm contact on MRI, Anterior pituitary hormone panel for hypopituitarism, Ki-67 and invasion (recurrence risk).
Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.
The treatments I may be offered
- Incidental, away from the chiasm: Observation with MRI and visual fields. (Pituitary tumours (pituitary neuroendocrine tumours) and pituitary carcinoma)
- Visual compromise, growth or recurrence: Transsphenoidal surgery; radiotherapy or radiosurgery for residual or recurrent tumour; temozolomide for aggressive tumours. (Stereotactic radiosurgery (Gamma Knife, CyberKnife, linac SRS), Temozolomide, Pituitary tumours (pituitary neuroendocrine tumours) and pituitary carcinoma)
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