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Below, week by week, is what OnCo's record of Esthesioneuroblastoma (olfactory neuroblastoma) says about the first two months: the order is typical, the timing is yours to ask about. Esthesioneuroblastoma is a rare cancer of the nasal cavity and sinuses that arises from the smell-sensing olfactory nerve lining at the roof of the nose, next to the brain. It is treated with surgery through the nose or skull base followed by radiotherapy, with chemotherapy added for high-grade or widespread tumours, and because it can return a decade or more later patients are followed for life. 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.
Endoscopic biopsy with immunohistochemistry, MRI and CT of the sinuses and skull base, neck imaging, DOTATATE PET where available.
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.
Endoscopic endonasal or craniofacial resection with skull base reconstruction by a skull base team, followed by postoperative radiotherapy (intensity-modulated or proton) for nearly all patients.
Induction cisplatin and etoposide, then surgery and radiotherapy or definitive chemoradiotherapy; elective neck irradiation considered.
Repeat surgery or re-irradiation for local relapse; lutetium-177 dotatate for somatostatin-receptor-positive disease; platinum-etoposide or temozolomide; trials.
MRI surveillance indefinitely because of late relapse; management of anosmia, cerebrospinal fluid leak and visual effects.
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.
Every term links to the glossary.