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Poorly differentiated chordoma is a rare, aggressive form of chordoma of children and young adults, mostly at the base of the skull or in the neck, defined by loss of the SMARCB1 (INI1) protein. It grows faster and spreads more than ordinary chordoma, and the SMARCB1 loss makes it a candidate for drugs that block EZH2, though surgery and radiotherapy remain the treatment. Below, week by week, is what OnCo's record of Poorly differentiated chordoma (SMARCB1-deficient) 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.
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.
Maximal safe resection and proton radiotherapy as on the chordoma page; EZH2 inhibition under study for SMARCB1-deficient tumours.
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.
Much of what helps in the first weeks is free if you know to ask: testing, helplines, rides and lodging, second opinions, trial travel.