• TNM staging: TNM staging is the universal system describing tumour size (T), lymph node spread (N), and distant metastasis (M).
• Dysphagia (difficulty swallowing): Trouble swallowing, either because a tumour narrows the food pipe or throat, or because radiotherapy and surgery to the head, neck or chest have damaged the muscles and nerves that coordinate swallowing.
• Head and neck subsites (oral cavity, oropharynx, larynx): Head and neck cancer is really several cancers named by exact location: mouth (oral cavity), back of the throat (oropharynx, where HPV cancers arise), voice box (larynx), lower throat (hypopharynx) and behind the nose (nasopharynx).
• LGR5: A marker of stem cells in the gut and of stem-like cells in tumours, used to aim drugs at the cells that regrow a cancer.
• Feeding tube (gastrostomy, PEG, jejunostomy): A tube placed into the stomach (gastrostomy, PEG) or small bowel (jejunostomy) so a patient who cannot swallow enough can still be fed through the gut.
• Organ preservation (watch-and-wait, bladder-sparing, larynx preservation): Curing a cancer with drugs and radiotherapy so that the organ (rectum, bladder, larynx, limb) does not have to be removed, keeping surgery in reserve for the minority whose cancer regrows.
• Dose-dense and metronomic chemotherapy: Two opposite ways of rescheduling the same drugs: dose-dense gives standard doses more often (every two weeks instead of three, supported by growth factors) to deny the tumour recovery time; metronomic gives small doses continuously to attack tumour blood vessels with little toxicity.
• Perineural invasion (PNI): Cancer cells growing along the sheath of a nerve.
• Radiation dermatitis (skin reaction): Redness, dryness, itching and sometimes peeling of the skin in the treated area, building up over the course and settling a few weeks after it ends.
• Nutrition impact symptoms: The side-effects of cancer and its treatment that stop people eating: nausea, mouth soreness, taste changes, difficulty swallowing, early fullness, constipation, pain and low mood.

Biomarker results to ask for: HPV/p16, PD-L1 CPS, EGFR, HPV / p16 status (staging and prognosis), PD-L1 CPS (first-line pembrolizumab eligibility and KEYNOTE-689), EGFR (near-universal; cetuximab, bispecifics), EBV DNA (nasopharyngeal carcinoma surveillance), ctHPV-DNA (response and recurrence), TP53, CDKN2A, PIK3CA, NOTCH1 (HPV-negative genomics), Smoking history (modifies HPV-positive prognosis).

Scans and tests linked to this cancer: Companion diagnostics, DPYD genotyping and DPD phenotyping before fluoropyrimidines, Histopathology & immunohistochemistry, In-room imaging for radiotherapy (cone-beam CT, ExacTrac, CT-on-rails, HyperSight), Liquid biopsy (ctDNA), SPECT & bone scan.

Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.

• Prevention: HPV vaccination (also prevents oropharyngeal cancer in men), tobacco and alcohol cessation; no validated screening. (HPV & HBV vaccination)
• Resectable: Neoadjuvant + adjuvant pembrolizumab with surgery; or chemoradiation. (Pembrolizumab, IMRT / IGRT (modern external beam), Robotic & minimally invasive surgery)
• Early stage (I-II) oral cavity and larynx: Single-modality surgery or radiation; sentinel node or elective neck dissection for oral cavity; larynx preservation with radiation for T1-T2 glottic cancer. (IMRT / IGRT (modern external beam), Sentinel lymph node biopsy)
• Early HPV-positive oropharynx: TORS with pathology-guided adjuvant therapy or definitive (chemo)radiation; standard 70 Gy dose because de-escalation trials failed. (Transoral robotic surgery (TORS), NRG-HN002 & NRG-HN005 (HPV+ de-escalation), Caution: de-escalating radiation on HPV status alone, RTOG 0129 (HPV analysis))
• Locally advanced, resectable (stage III-IVA): Neoadjuvant pembrolizumab, surgery, adjuvant pembrolizumab with (chemo)radiation for PD-L1 CPS ≥1 (KEYNOTE-689); otherwise surgery then risk-adapted (chemo)radiation. (KEYNOTE-689, Pembrolizumab, Immunotherapy before surgery rather than with chemoradiation (HNSCC))
• Locally advanced, unresectable or organ preservation: Cisplatin (100 mg/m² q3w or weekly) with 70 Gy IMRT; cetuximab-radiation only if cisplatin-ineligible; concurrent immunotherapy is not indicated (JAVELIN Head and Neck 100, KEYNOTE-412) and adding xevinapant to chemoradiation gave no benefit (TrilynX). (IMRT / IGRT (modern external beam), JAVELIN Head and Neck 100, TrilynX)
• Locally recurrent, unresectable (Japan): Cetuximab sarotalocan photoimmunotherapy; re-irradiation (proton or IMRT) in selected patients elsewhere. (Cetuximab sarotalocan, Photoimmunotherapy & photodynamic therapy, Proton therapy, Boron neutron capture therapy)
• Recurrent/metastatic: Pembrolizumab ± platinum/5-FU; cetuximab-based; photoimmunotherapy (Japan). (Pembrolizumab, Photoimmunotherapy & photodynamic therapy)
• Recurrent or metastatic, first line: Pembrolizumab alone (CPS ≥20, or ≥1) or with platinum/5-FU (any CPS); EXTREME if immunotherapy contraindicated. (KEYNOTE-048, Pembrolizumab, EXTREME)
• Nasopharyngeal carcinoma: Induction gemcitabine-cisplatin then chemoradiation for locoregional disease; toripalimab (or other PD-1) + gemcitabine-cisplatin for recurrent/metastatic; plasma EBV DNA for surveillance. (JUPITER-02, Toripalimab, IMRT / IGRT (modern external beam))
• Recurrent or metastatic, after platinum: Nivolumab or pembrolizumab if immunotherapy-naive; otherwise cetuximab, taxane, or methotrexate; clinical trials (bispecifics, ADCs). (CheckMate 141, Nivolumab, LiGeR-HN1, FORTIFI-HN01)
• Survivorship: Swallowing and speech therapy, dental care after radiation, thyroid monitoring, lymphoedema management, smoking cessation; second primary surveillance. (Supportive Care & Survivorship)

From the standard of care recorded for this cancer; which apply depends on your stage and biomarkers. Ask which the team recommends and why.