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?
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