Appointment sheet
Somatotroph pituitary neuroendocrine tumour (acromegaly)
Prepared with OnCo (onco.cc/prep/somatotroph-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 IGF-1 and growth hormone after glucose, Granulation pattern and cytokeratin staining; PIT1 lineage, Somatostatin receptor 2 and 5 expression, AIP and GPR101 germline testing in young or familial cases), 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?
Persistent disease
- 6.For my situation (persistent disease), which of the standard options do you recommend and why?
- 7.Am I a candidate for Pasireotide, Pegvisomant, Cabergoline, 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: IGF-1 and growth hormone after glucose, Granulation pattern and cytokeratin staining; PIT1 lineage, Somatostatin receptor 2 and 5 expression (drug response), AIP and GPR101 germline testing in young or familial cases.
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: Transsphenoidal surgery at a pituitary centre. (Pituitary tumours (pituitary neuroendocrine tumours) and pituitary carcinoma)
- Persistent disease: Somatostatin analogues or pasireotide, pegvisomant, cabergoline, alone or combined; radiotherapy for residual tumour not controlled medically. (Pasireotide, Pegvisomant, Cabergoline, Stereotactic radiosurgery (Gamma Knife, CyberKnife, linac SRS))
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