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Below, week by week, is what OnCo's record of Medullary thyroid cancer says about the first two months: the order is typical, the timing is yours to ask about. Medullary thyroid cancer comes from the calcitonin-making C cells, not the thyroid hormone cells, so radioactive iodine does not work. Surgery is the only cure, a quarter of cases run in families through the RET gene, and the RET-selective drug selpercatinib has transformed treatment of advanced disease. Sections appear only where the record has something to say. Orientation, not medical advice.
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.
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.
Total thyroidectomy with central compartment dissection, lateral dissection when nodes are involved; no radioactive iodine; levothyroxine replacement only.
Prophylactic total thyroidectomy in childhood, timed by the RET codon risk category (before age one in MEN2B).
Selpercatinib first line (LIBRETTO-531 beat cabozantinib and vandetanib); pralsetinib as an alternative.
Cabozantinib or vandetanib; external radiotherapy for local control; somatostatin analogues for diarrhoea from calcitonin.
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.
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.