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Appointment sheet: Oropharyngeal cancer (tonsil and base of tongue)

One page to bring and write on: your details, the questions for Oropharyngeal cancer (tonsil and base of tongue) 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

Oropharyngeal cancer (tonsil and base of tongue)

Prepared with OnCo (onco.cc/prep/oropharyngeal-cancer/). 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 p16 immunohistochemistry and HPV DNA or RNA, Smoking history, Circulating HPV DNA, PD-L1 combined positive score, TP53 mutation), 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?
Diagnosis and staging
  1. 5.For my situation (diagnosis and staging), which of the standard options do you recommend and why?
Early disease
  1. 6.For my situation (early disease), which of the standard options do you recommend and why?
Locally advanced disease
  1. 7.For my situation (locally advanced disease), which of the standard options do you recommend and why?
  2. 8.Am I a candidate for Cisplatin, Cetuximab, and what side effects should I expect?
  3. 9.How do the results of RTOG 1016 and De-ESCALaTE HPV apply to someone like me?
Recurrent or metastatic
  1. 10.For my situation (recurrent or metastatic), which of the standard options do you recommend and why?
  2. 11.Am I a candidate for Pembrolizumab, Nivolumab, and what side effects should I expect?
  3. 12.How do the results of KEYNOTE-048 and CheckMate 141 apply to someone like me?
Prevention
  1. 13.For my situation (prevention), which of the standard options do you recommend and why?
Any stage
  1. 14.Are there clinical trials I could join, for example of De-ESCALaTE HPV, Adaptive radiotherapy (online replanning), HPV & HBV vaccination?
  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 “How far treatment can be reduced in HPV-positive disease without losing cures”. How does that affect my plan?
  5. 18.I read that “HPV-negative oropharyngeal cancer still has poor outcomes”. How does that affect my plan?

Tests and results to bring

Diagnosis and staging: Examination and biopsy with p16 and HPV testing, PET-CT, and separate staging for HPV-positive disease.

Biomarker results to ask for: p16 immunohistochemistry and HPV DNA or RNA, Smoking history (worsens HPV-positive outlook), Circulating HPV DNA (surveillance and de-escalation trials), PD-L1 combined positive score (recurrent disease), TP53 mutation (HPV-negative).

Scans and tests linked to this cancer: HPV DNA testing and self-sampling.

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