Appointment sheet
Lactotroph pituitary neuroendocrine tumour (prolactinoma)
Prepared with OnCo (onco.cc/prep/lactotroph-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
10 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 Serum prolactin, PIT1 and oestrogen receptor alpha lineage markers; prolactin immunostaining, Pituitary MRI, Ki-67 and mitoses), 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?
First line
- 5.For my situation (first line), which of the standard options do you recommend and why?
- 6.Am I a candidate for Cabergoline, Bromocriptine, and what side effects should I expect?
Resistant, intolerant or aggressive
- 7.For my situation (resistant, intolerant or aggressive), which of the standard options do you recommend and why?
- 8.Am I a candidate for Temozolomide, and what side effects should I expect?
Any stage
- 9.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
- 10.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: Serum prolactin (with macroprolactin and hook-effect checks), PIT1 and oestrogen receptor alpha lineage markers; prolactin immunostaining, Pituitary MRI (micro- versus macroadenoma; cavernous sinus invasion), Ki-67 and mitoses (aggressiveness).
Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.
The treatments I may be offered
- First line: Cabergoline (or bromocriptine), with attempted withdrawal after prolonged normalisation and shrinkage. (Cabergoline, Bromocriptine, Pituitary tumours (pituitary neuroendocrine tumours) and pituitary carcinoma)
- Resistant, intolerant or aggressive: Transsphenoidal surgery; radiotherapy and temozolomide for aggressive or giant tumours as on the parent page. (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