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Living with cancer· Appointment prep

Appointment sheet: Locoregionally advanced nasopharyngeal carcinoma (stage III to IVA)

One page to bring and write on: your details, the questions for Locoregionally advanced nasopharyngeal carcinoma (stage III to IVA) plus your own, the words you may hear, what to bring, the treatments the standard of care names, and room for the answers and agreed next steps. What you type stays in this browser. Print it or save it as a PDF. New to all this? Start with the first 60 days. Orientation, not medical advice.

Tick the questions to print

All of this cancer's questions start ticked. Untick what does not apply; ticks are kept in this browser. .

Your own questions

Shared with the prep pack, so questions you add there appear here too.

Print or save as PDF

Use (or Ctrl+P, Cmd+P on a Mac). To keep a copy, choose Save as PDF as the destination in the print dialog. Only the sheet prints; the controls stay on screen. Your typed notes print where you typed them; empty fields print as ruled lines to write on.

Appointment sheet

Locoregionally advanced nasopharyngeal carcinoma (stage III to IVA)

Prepared with OnCo (onco.cc/prep/locoregionally-advanced-nasopharyngeal-carcinoma/). Orientation, not medical advice; your team knows your case.

My details

Name
Date of appointment
Hospital and clinician
Who is coming with me

What I know, what is unclear, changes to discuss

Saved in this browser
What I know so far
What is unclear to me
Changes since last time

My questions

18 on the sheet
Newly diagnosed
  1. 1.What is my exact diagnosis, stage, and grade, and which tests established them?
  2. 2.Which biomarkers have been tested on my tumour (for example Plasma EBV DNA, EBER in situ hybridisation on biopsy, TNM stage on MRI of the nasopharynx and neck and PET-CT, Response to induction chemotherapy on MRI, PD-L1), and what were the results?
  3. 3.Which subtype is my cancer, and does that change the recommended treatment?
  4. 4.Is germline (inherited) genetic testing recommended for me or my family?
Staging
  1. 5.For my situation (staging), which of the standard options do you recommend and why?
Stage III to IVA, standard
  1. 6.For my situation (stage iii to iva, standard), which of the standard options do you recommend and why?
  2. 7.Am I a candidate for Gemcitabine + cisplatin, Cisplatin, and what side effects should I expect?
After chemoradiotherapy
  1. 8.For my situation (after chemoradiotherapy), which of the standard options do you recommend and why?
  2. 9.Am I a candidate for Capecitabine, and what side effects should I expect?
Immunotherapy in the curative setting
  1. 10.For my situation (immunotherapy in the curative setting), which of the standard options do you recommend and why?
  2. 11.Am I a candidate for Camrelizumab, Toripalimab, and what side effects should I expect?
  3. 12.How do the results of A Study of YL201 in Combination With Toripalimab and With or Without Cisplatin in Nasopharyngeal Carcinoma. apply to someone like me?
Follow-up
  1. 13.For my situation (follow-up), which of the standard options do you recommend and why?
Any stage
  1. 14.Are there clinical trials I could join, for example of Toripalimab, Camrelizumab, Proton therapy, A Study of YL201 in Combination With Toripalimab and With or Without Cisplatin in Nasopharyngeal Carcinoma.?
  2. 15.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
  3. 16.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
  4. 17.I read that “Which patients can safely have less chemotherapy or radiotherapy is being defined trial by trial”. How does that affect my plan?
  5. 18.I read that “Late toxicities of skull-base radiotherapy last for life”. How does that affect my plan?

The words I may hear

  • Plasma EBV DNA: Fragments of Epstein-Barr virus DNA in the blood that measure nasopharyngeal carcinoma: used to screen healthy people in endemic regions, to stage, to decide who needs extra treatment after radiotherapy, and to detect relapse.
  • 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).
  • Epstein-Barr virus (EBV) in cancer: The common glandular-fever virus, carried lifelong by most adults, which in a minority of people drives nasopharyngeal cancer, some stomach cancers and several lymphomas.
  • Chemoradiation (chemoradiotherapy, CRT): Radiotherapy given at the same time as chemotherapy, which sensitises the cancer to radiation.

Tests and results to bring

Staging: MRI of the nasopharynx and neck, PET-CT or CT of chest and abdomen with bone scan, plasma EBV DNA, dental and audiological assessment.

Biomarker results to ask for: Plasma EBV DNA (baseline load and post-treatment clearance), EBER in situ hybridisation on biopsy, TNM stage on MRI of the nasopharynx and neck and PET-CT, Response to induction chemotherapy on MRI (adaptive treatment), PD-L1 (not required for PD-1 therapy), Hearing, thyroid and pituitary baselines for late toxicity.

Scans and tests linked to this cancer: Liquid biopsy (ctDNA), MRI, PET/CT.

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

The treatments I may be offered

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

Answers and next steps

Saved in this browser
What I was told
Agreed next steps, dates and who to call