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Living with cancer· Appointment prep

Appointment sheet: HPV-negative head and neck squamous cell carcinoma (including HPV-negative oropharyngeal cancer)

One page to bring and write on: your details, the questions for HPV-negative head and neck squamous cell carcinoma (including HPV-negative 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-negative head and neck squamous cell carcinoma (including HPV-negative oropharyngeal cancer)

Prepared with OnCo (onco.cc/prep/hpv-negative-head-and-neck-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

26 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 negative and HPV DNA negative, PD-L1 combined positive score, TP53 mutation and CDKN2A loss, EGFR expression, Extranodal extension and margin status), 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?
Resectable stage III to IVA
  1. 6.For my situation (resectable stage iii to iva), which of the standard options do you recommend and why?
  2. 7.Am I a candidate for Pembrolizumab, and what side effects should I expect?
  3. 8.How do the results of KEYNOTE-689 apply to someone like me?
After surgery, high risk
  1. 9.For my situation (after surgery, high risk), which of the standard options do you recommend and why?
  2. 10.Am I a candidate for Cisplatin, Nivolumab, and what side effects should I expect?
  3. 11.How do the results of NIVOPOSTOP (GORTEC 2018-01) apply to someone like me?
Unresectable or organ-preserving
  1. 12.For my situation (unresectable or organ-preserving), which of the standard options do you recommend and why?
  2. 13.Am I a candidate for Cisplatin, Cetuximab, and what side effects should I expect?
  3. 14.How do the results of Bonner trial (cetuximab plus radiotherapy) apply to someone like me?
Recurrent or metastatic
  1. 15.For my situation (recurrent or metastatic), which of the standard options do you recommend and why?
  2. 16.Am I a candidate for Pembrolizumab, Cetuximab, and what side effects should I expect?
  3. 17.How do the results of KEYNOTE-048 and EXTREME apply to someone like me?
Resource-limited settings
  1. 18.For my situation (resource-limited settings), which of the standard options do you recommend and why?
  2. 19.Am I a candidate for Methotrexate, and what side effects should I expect?
  3. 20.How do the results of Oral metronomic chemotherapy vs intravenous cisplatin (Tata Memorial) and Low-dose nivolumab plus metronomic chemotherapy (Tata Memorial) apply to someone like me?
Prevention
  1. 21.For my situation (prevention), which of the standard options do you recommend and why?
Any stage
  1. 22.Are there clinical trials I could join, for example of Ficerafusp alfa, FORTIFI-HN01, A Study of Ficlatuzumab in Combination With Cetuximab in Participants With Recurrent or Metastatic (R/M) HPV Negative Head and Neck Squamous Cell Carcinoma, A Study of Dostarlimab vs Placebo After Chemoradiation in Adult Participants With Locally Advanced Unresected Head and Neck Squamous Cell Carcinoma?
  2. 23.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
  3. 24.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
  4. 25.I read that “Cure rates for locally advanced HPV-negative disease have barely moved in twenty years”. How does that affect my plan?
  5. 26.I read that “No predictive biomarker beyond PD-L1, which is imperfect”. How does that affect my plan?

The words I may hear

  • PD-L1 expression testing (22C3, SP142, SP263): A stain on the tumour biopsy that measures how much of the PD-L1 'don't attack me' protein is present, scored as a tumour proportion or combined positive score.
  • 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.
  • CDKN2A/B homozygous deletion: Losing both copies of the CDKN2A/B genes on chromosome 9p21 removes the cell's main brake on division; in an IDH-mutant glioma it alone makes the tumour grade 4, in mesothelioma and melanoma it marks aggressive disease, and the neighbouring MTAP gene usually goes with it, opening a new drug target.
  • 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: Biopsy with p16 (and HPV testing for oropharyngeal primaries), PD-L1 combined positive score, panendoscopy for second primaries, CT or MRI and PET-CT for stage III to IV.

Biomarker results to ask for: p16 negative and HPV DNA negative, PD-L1 combined positive score (perioperative and recurrent treatment), TP53 mutation and CDKN2A loss, EGFR expression (a target, not a predictive marker), Extranodal extension and margin status (postoperative treatment), Smoking and alcohol exposure.

Scans and tests linked to this cancer: 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