Appointment sheet
Oral cavity cancer (mouth and tongue)
Prepared with OnCo (onco.cc/prep/oral-cavity-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 browserWhat I know so far
What is unclear to me
Changes since last time
My questions
17 on the sheetNewly diagnosed
- 1.What is my exact diagnosis, stage, and grade, and which tests established them?
- 2.Which biomarkers have been tested on my tumour (for example Depth of invasion, Extranodal extension and margin status, TP53 mutation, PD-L1 combined positive score), and what were the results?
- 3.Which subtype is my cancer, and does that change the recommended treatment?
- 4.Is germline (inherited) genetic testing recommended for me or my family?
Screening in high-risk populations
- 5.For my situation (screening in high-risk populations), which of the standard options do you recommend and why?
Early disease
- 6.For my situation (early disease), which of the standard options do you recommend and why?
Locally advanced disease
- 7.For my situation (locally advanced disease), which of the standard options do you recommend and why?
- 8.Am I a candidate for Cisplatin, and what side effects should I expect?
Recurrent or metastatic
- 9.For my situation (recurrent or metastatic), which of the standard options do you recommend and why?
- 10.Am I a candidate for Pembrolizumab, Methotrexate, and what side effects should I expect?
- 11.How do the results of KEYNOTE-048 and Oral metronomic chemotherapy vs intravenous cisplatin (Tata Memorial) apply to someone like me?
Prevention
- 12.For my situation (prevention), which of the standard options do you recommend and why?
Any stage
- 13.Are there clinical trials I could join, for example of Pembrolizumab, Nivolumab?
- 14.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
- 15.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
- 16.I read that “Late presentation remains the norm in the highest-incidence countries”. How does that affect my plan?
- 17.I read that “Betel quid use is still rising in parts of Asia”. 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.
Tests and results to bring
Biomarker results to ask for: Depth of invasion (staging and elective neck dissection), Extranodal extension and margin status, TP53 mutation, PD-L1 combined positive score (recurrent disease).
Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.
The treatments I may be offered
- Screening in high-risk populations: Visual oral examination by trained workers reduced mouth cancer deaths in the Kerala trial; opportunistic examination by dentists elsewhere. (Head and neck squamous cell carcinoma)
- Prevention: Tobacco and betel quid cessation, alcohol reduction, treatment of premalignant patches. (Smoking cessation in cancer patients)
- Early disease: Wide excision with elective neck dissection when depth of invasion exceeds about 3 to 4 mm; sentinel node biopsy in selected cases. (Head and neck squamous cell carcinoma)
- Locally advanced disease: Resection with neck dissection and free-flap reconstruction, then postoperative radiotherapy, or cisplatin chemoradiation for positive margins or extranodal extension. (Cisplatin, IMRT / IGRT (modern external beam))
- Recurrent or metastatic: Pembrolizumab with or without chemotherapy (KEYNOTE-048); low-cost metronomic methotrexate and celecoxib where access is limited. (Pembrolizumab, KEYNOTE-048, Methotrexate, Oral metronomic chemotherapy vs intravenous cisplatin (Tata Memorial))
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 browserWhat I was told
Agreed next steps, dates and who to call