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Living with cancer· Appointment prep

Appointment sheet: HPV-positive oropharyngeal cancer

One page to bring and write on: your details, the questions for HPV-positive oropharyngeal cancer 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

HPV-positive oropharyngeal cancer

Prepared with OnCo (onco.cc/prep/hpv-positive-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

23 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, HPV DNA or E6/E7 RNA in situ hybridisation, Smoking pack-years, Circulating tumour HPV DNA, PD-L1 combined positive score), 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 (small primary, limited nodes)
  1. 6.For my situation (early disease (small primary, limited nodes)), which of the standard options do you recommend and why?
  2. 7.How do the results of ECOG-ACRIN E3311 apply to someone like me?
Locally advanced disease
  1. 8.For my situation (locally advanced disease), which of the standard options do you recommend and why?
  2. 9.Am I a candidate for Cisplatin, Cetuximab, and what side effects should I expect?
  3. 10.How do the results of RTOG 1016 and De-ESCALaTE HPV apply to someone like me?
De-escalation
  1. 11.For my situation (de-escalation), which of the standard options do you recommend and why?
  2. 12.How do the results of NRG-HN002 & NRG-HN005 (HPV+ de-escalation) and PATHOS apply to someone like me?
Surveillance
  1. 13.For my situation (surveillance), which of the standard options do you recommend and why?
Recurrent or metastatic
  1. 14.For my situation (recurrent or metastatic), which of the standard options do you recommend and why?
  2. 15.Am I a candidate for Pembrolizumab, and what side effects should I expect?
  3. 16.How do the results of KEYNOTE-048 apply to someone like me?
Prevention
  1. 17.For my situation (prevention), which of the standard options do you recommend and why?
  2. 18.Am I a candidate for Nonavalent HPV vaccine, and what side effects should I expect?
Any stage
  1. 19.Are there clinical trials I could join, for example of Circulating tumour HPV DNA (ctHPV-DNA), PATHOS, NRG-HN002 & NRG-HN005 (HPV+ de-escalation), ctHPV-DNA-adapted de-escalation of chemoradiation?
  2. 20.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
  3. 21.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
  4. 22.I read that “Which patients can safely have less treatment, and by what test”. How does that affect my plan?
  5. 23.I read that “Long-term dry mouth, swallowing difficulty and fibrosis in people cured in their fifties”. How does that affect my plan?

The words I may hear

  • Extranodal extension (ENE): Extranodal extension means cancer in a lymph node has burst through the node's capsule into the surrounding fat; in head and neck cancer it is the single finding after surgery that most often turns radiotherapy into chemoradiotherapy, and in HPV-negative disease it moves the stage up.
  • HPV-positive (p16) head and neck cancer: Throat cancers caused by the human papillomavirus, identified by a p16 stain.
  • Chemoradiation (chemoradiotherapy, CRT): Radiotherapy given at the same time as chemotherapy, which sensitises the cancer to radiation.

Tests and results to bring

Diagnosis and staging: Fine-needle biopsy of the neck node with p16 staining, HPV confirmation where p16 is equivocal, examination and imaging of the tonsils and tongue base, and PET-CT; staged with the HPV-positive system.

Biomarker results to ask for: p16 immunohistochemistry (strong nuclear and cytoplasmic staining in at least 70 percent of cells), HPV DNA or E6/E7 RNA in situ hybridisation (confirms p16), Smoking pack-years (modifies risk group), Circulating tumour HPV DNA (surveillance and adaptive de-escalation), PD-L1 combined positive score (recurrent disease).

Scans and tests linked to this cancer: PET/CT, Circulating tumour HPV DNA (ctHPV-DNA).

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