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Living with cancer· Appointment prep

Appointment sheet: Oral tongue and floor of mouth cancer

One page to bring and write on: your details, the questions for Oral tongue and floor of mouth 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

Oral tongue and floor of mouth cancer

Prepared with OnCo (onco.cc/prep/oral-tongue-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 Depth of invasion, Worst pattern of invasion and perineural invasion, Margin status, Extranodal extension, 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?
Primary treatment (T1 to T2, clinically node-negative)
  1. 6.For my situation (primary treatment (t1 to t2, clinically node-negative)), which of the standard options do you recommend and why?
  2. 7.How do the results of Elective vs therapeutic neck dissection in node-negative oral cancer (Tata Memorial) apply to someone like me?
Locally advanced (T3 to T4 or node-positive)
  1. 8.For my situation (locally advanced (t3 to t4 or node-positive)), which of the standard options do you recommend and why?
  2. 9.Am I a candidate for Cisplatin, and what side effects should I expect?
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, Methotrexate, and what side effects should I expect?
  3. 12.How do the results of KEYNOTE-048 and Oral metronomic chemotherapy vs intravenous cisplatin (Tata Memorial) 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 Pembrolizumab, KEYNOTE-689, Sentinel lymph node biopsy, NIVOPOSTOP (GORTEC 2018-01)?
  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 “Why tongue cancer is rising in young non-smokers”. How does that affect my plan?
  5. 18.I read that “Whether sentinel node biopsy can replace elective neck dissection safely”. 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.
  • Depth of invasion (DOI): Depth of invasion is how far down a cancer has grown from the surface it started on, measured in millimetres on the pathology slide; in mouth cancer it now sets the T stage and a depth over 4 mm means the neck nodes are treated even when they look clean, and in early stomach cancer it decides whether an endoscopic removal was enough.
  • 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, MRI or CT of the tongue and neck to measure depth of invasion and nodes, chest imaging or PET-CT for advanced stage, and dental assessment before radiotherapy.

Biomarker results to ask for: Depth of invasion (staging and elective neck dissection), Worst pattern of invasion and perineural invasion, Margin status, Extranodal extension, TP53 mutation, PD-L1 combined positive score (recurrent disease).

Scans and tests linked to this cancer: PET/CT, Oral cancer visual screening.

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