The first 60 days: Pituitary tumours (pituitary neuroendocrine tumours) and pituitary carcinoma
Pituitary tumours are usually benign growths of the hormone gland at the base of the brain that cause trouble by overproducing hormones or pressing on the optic nerves. Prolactin-producing tumours melt away with a tablet, most others are cured by surgery through the nose, and the rare aggressive ones respond to the chemotherapy drug temozolomide. Below, week by week, is what OnCo's record of Pituitary tumours (pituitary neuroendocrine tumours) and pituitary carcinoma says about the first two months: the order is typical, the timing is yours to ask about. Sections appear only where the record has something to say. Orientation, not medical advice.
What happens now
Staging tests establish exactly what and where the cancer is. Everything else follows from the answers.
Ask which of these were tested and what the results were; see the report reader for what each value means.
These specialties appear in the standard of care for this cancer. In most centres they meet weekly as a tumour board to agree each plan; you can ask when yours was discussed and what was decided.
- SurgeonNamed in the standard of care for: Prolactinoma, Acromegaly, Cushing disease, symptomatic non-functioning tumours.
- Medical oncologistNamed in the standard of care for: Prolactinoma, Acromegaly, Cushing disease, symptomatic non-functioning tumours, Aggressive PitNET or pituitary carcinoma.
- Clinical oncologist (radiotherapy)Named in the standard of care for: Acromegaly, Cushing disease, symptomatic non-functioning tumours, Aggressive PitNET or pituitary carcinoma.
A second opinion from a centre that treats many similar cases is normal, not rude; the standard of care tells you what to compare it against.
Each row is a setting from the standard of care, in the order it usually arises. Not all will apply to you; your stage and biomarkers decide which do. The guideline grade, where recorded, says how strong the evidence is.
Cabergoline first line, titrated to normal prolactin and tumour shrinkage; surgery for resistance, intolerance or pituitary apoplexy.
- 2.Acromegaly, Cushing disease, symptomatic non-functioning tumoursEndocrine Society guidelines: acromegaly (2014), Cushing (2015)
Endoscopic transsphenoidal resection; medical therapy for persistent disease (somatostatin analogues, pasireotide, pegvisomant for acromegaly; osilodrostat, metyrapone for Cushing); radiotherapy or radiosurgery for residual tumour.
Temozolomide (standard schedule, at least 3 cycles before assessing response), with radiotherapy where not previously given; PRRT for SSTR-positive tumours, bevacizumab or checkpoint inhibitors in trials or case series after temozolomide failure.
Generated from this cancer's standard of care, biomarkers and open problems. Take the group that matches where you are. To tick, add your own and print, open the one-page appointment sheet.
Newly diagnosed
- What is my exact diagnosis, stage, and grade, and which tests established them?Everything else follows from an accurate stage and subtype.
- Which biomarkers have been tested on my tumour (for example Serum prolactin, IGF-1, cortisol and ACTH, TSH, Transcription factor lineageand hormone immunohistochemistry, Ki-67 and mitotic count, MGMT expression, Cavernous sinus invasionon MRI), and what were the results?These results decide eligibility for targeted therapy, immunotherapy, and trials.
- Which subtype is my cancer, and does that change the recommended treatment?Recognised subtypes for this cancer include Lactotroph tumour, Somatotroph tumour, Corticotroph tumour.
- Is germline (inherited) genetic testing recommended for me or my family?Inherited variants can change treatment and matter for relatives.
Prolactinoma
- For my situation (prolactinoma), which of the standard options do you recommend and why?Guideline options include: Cabergoline first line, titrated to normal prolactin and tumour shrinkage; surgery for resistance, intolerance or pituitary apoplexy.
Acromegaly, Cushing disease, symptomatic non-functioning tumours
- For my situation (acromegaly, cushing disease, symptomatic non-functioning tumours), which of the standard options do you recommend and why?Guideline options include: Endoscopic transsphenoidal resection; medical therapy for persistent disease (somatostatin analogues, pasireotide, pegvisomant for acromegaly; osilodrostat, metyrapone for Cushing); radiotherapy or radiosurgery for residual tumour.
- Am I a candidate for Somatostatin analogues (octreotide, lanreotide), and what side effects should I expect?Knowing the expected toxicities helps you plan work, family, and supportive care.
Aggressive PitNET or pituitary carcinoma
- For my situation (aggressive pitnet or pituitary carcinoma), which of the standard options do you recommend and why?Guideline options include: Temozolomide (standard schedule, at least 3 cycles before assessing response), with radiotherapy where not previously given; PRRT for SSTR-positive tumours, bevacizumab or checkpoint inhibitors in trials or case series after temozolomide failure.
- Am I a candidate for Temozolomide, Lutetium-177 dotatate, Bevacizumab, and what side effects should I expect?Knowing the expected toxicities helps you plan work, family, and supportive care.
Any stage
- Are there clinical trials I could join, for example of Temozolomide, Peptide receptor radionuclide therapy (PRRT), SBRT / SABR (stereotactic radiotherapy)?Trials are how the next standard of care is set; asking early keeps options open.
- Would a second opinion at a high-volume centre change anything, and can you help arrange it?Rare or high-stakes decisions benefit from a centre that treats many similar patients.
- What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?Supportive care improves quality of life and helps patients complete treatment.
- I read that “Predicting aggressive behaviour at diagnosis: lineage, Ki-67 and molecular markers are being combined into risk scores”. How does that affect my plan?Open problems are where trials and second opinions matter most.
- I read that “Salvage after temozolomide: PRRT, immunotherapy and bevacizumab have only case-series evidence”. How does that affect my plan?Open problems are where trials and second opinions matter most.
Trials open now for this cancer in OnCo, largest phase first. Joining a trial is a decision like any other: ask what the comparison arm is, whether a placebo is used, and what happens if you leave. The cancer page searches ClinicalTrials.gov live for more.
Much of what helps in the first weeks is free if you know to ask: testing, helplines, rides and lodging, second opinions, trial travel.
- Pituitary tumours (pituitary neuroendocrine tumours) and pituitary carcinoma: the full pagePituitary tumours are usually benign growths of the hormone gland at the base of the brain that cause trouble by overproducing hormones or pressing on the optic nerves. Prolactin-producing tumours melt away with a tablet, most others are cured by surgery through the nose, and the rare aggressive ones respond to the chemotherapy drug temozolomide.
- One-page appointment sheetYour questions, the words you may hear, what to bring, and space for the answers. Print it.
- Treatment sequencingWhich treatment tends to follow which, line by line.
- NavigatorStandard of care for your stage, what you have tried, and trials near you.
- MGMT promoter methylation: A chemical switch that turns off a DNA-repair gene.
- Rare cancers: Rare cancers are those with fewer than about 6 new cases per 100,000 people per year.
Every term links to the glossary.