The first 60 days: Parathyroid carcinoma
Parathyroid carcinoma is a cancer of the glands that control blood calcium, seen in a few people per ten million a year; most of its harm comes from dangerously high calcium rather than spread. Removing the tumour intact at the first operation gives the best chance of cure, and cinacalcet and bone-protecting drugs control calcium when it cannot be removed. Below, week by week, is what OnCo's record of Parathyroid 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.
- PathologistNamed in the standard of care for: All patients.
- SurgeonNamed in the standard of care for: Suspected or confirmed carcinoma, resectable, Hypercalcaemia, unresectable or metastatic disease.
- Medical oncologistNamed in the standard of care for: Hypercalcaemia, unresectable or metastatic disease.
- Palliative and supportive care teamNamed in the standard of care for: Hypercalcaemia, unresectable or metastatic disease.
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.
- 1.Suspected or confirmed carcinoma, resectableNCCN category Category 2A, NCCN Neuroendocrine and Adrenal Tumors (parathyroid carcinoma); American Association of Endocrine Surgeons guideline 2016
En bloc resection with ipsilateral thyroid lobectomy and removal of adherent tissue, avoiding capsule rupture; re-resection for loco-regional recurrence.
Cinacalcet titrated to calcium, denosumab or intravenous bisphosphonate, hydration; palliative resection or ablation of metastases to reduce PTH burden.
Germline CDC73 testing and family counselling; surveillance for jaw and renal tumours in carriers.
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 calcium and PTH, CDC73mutation and parafibromin loss, PGP9.5 and galectin-3 immunostaining, Ki-67 and capsular or vascular invasion), 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 Sporadic parathyroid carcinoma, Hyperparathyroidism-jaw tumour syndrome associated, Non-functioning parathyroid carcinoma.
- Is germline (inherited) genetic testing recommended for me or my family?Inherited variants can change treatment and matter for relatives.
Suspected or confirmed carcinoma, resectable
- For my situation (suspected or confirmed carcinoma, resectable), which of the standard options do you recommend and why?Guideline options include: En bloc resection with ipsilateral thyroid lobectomy and removal of adherent tissue, avoiding capsule rupture; re-resection for loco-regional recurrence.
Hypercalcaemia, unresectable or metastatic disease
- For my situation (hypercalcaemia, unresectable or metastatic disease), which of the standard options do you recommend and why?Guideline options include: Cinacalcet titrated to calcium, denosumab or intravenous bisphosphonate, hydration; palliative resection or ablation of metastases to reduce PTH burden.
All patients
- For my situation (all patients), which of the standard options do you recommend and why?Guideline options include: Germline CDC73 testing and family counselling; surveillance for jaw and renal tumours in carriers.
Any stage
- Are there clinical trials I could join, for example of Bone-modifying agents (bisphosphonates, denosumab), Immune checkpoint inhibitors?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 “Preoperative diagnosis: no reliable imaging or biochemical threshold, so many patients have inadequate first surgery”. How does that affect my plan?Open problems are where trials and second opinions matter most.
- I read that “No effective systemic anticancer therapy for metastatic disease; genomic profiling for actionable alterations and immunotherapy case series are the current approach”. How does that affect my plan?Open problems are where trials and second opinions matter most.
Much of what helps in the first weeks is free if you know to ask: testing, helplines, rides and lodging, second opinions, trial travel.
- Parathyroid carcinoma: the full pageParathyroid carcinoma is a cancer of the glands that control blood calcium, seen in a few people per ten million a year; most of its harm comes from dangerously high calcium rather than spread. Removing the tumour intact at the first operation gives the best chance of cure, and cinacalcet and bone-protecting drugs control calcium when it cannot be removed.
- 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.
- Hereditary cancer syndromes: About 5-10% of cancers arise from an inherited gene fault.
- 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.