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Below, week by week, is what OnCo's record of Adenoid cystic carcinoma says about the first two months: the order is typical, the timing is yours to ask about. Adenoid cystic carcinoma is a slow-growing cancer of the salivary glands that spreads along nerves and can come back years after treatment, often in the lungs. Surgery with radiotherapy is the treatment that cures it, chemotherapy has little effect, and the tablets lenvatinib and axitinib can hold spreading disease still for months rather than shrink it. 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.
Wide resection including involved nerves where needed, with neck dissection for node-positive disease, followed by postoperative radiotherapy to the bed and nerve pathways.
Definitive radiotherapy; carbon-ion or proton therapy where available (COSMIC, Heidelberg; fast-neutron series).
Observation with scans every few months; stereotactic radiotherapy or resection for isolated symptomatic metastases.
Lenvatinib or axitinib (phase 2 evidence); clinical trials preferred.
Cisplatin with doxorubicin and cyclophosphamide, or single agents, for symptomatic disease after kinase inhibitors; responses are uncommon.
MYB-directed REM-422, HG146 and NOTCH inhibitors for NOTCH1-mutant disease.
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.