The first 60 days: Oral cavity cancer (mouth and tongue)
Cancer of the mouth and tongue is caused mainly by tobacco, alcohol and betel quid and is usually visible or feelable early, yet often diagnosed late. Surgery is the mainstay, with radiotherapy or chemoradiation after operation for higher-risk disease, and reconstruction to restore speech and swallowing. Below, week by week, is what OnCo's record of Oral cavity cancer (mouth and tongue) says about the first two months: the order is typical, the timing is yours to ask about. Sections appear only where the record has something to say. Orientation, not medical advice.
What happens now
Staging tests establish exactly what and where the cancer is. Everything else follows from the answers.
Ask which of these were tested and what the results were; see the report reader for what each value means.
These specialties appear in the standard of care for this cancer. In most centres they meet weekly as a tumour board to agree each plan; you can ask when yours was discussed and what was decided.
- PathologistNamed in the standard of care for: Early disease.
- SurgeonNamed in the standard of care for: Early disease, Locally advanced disease.
- Medical oncologistNamed in the standard of care for: Locally advanced disease, Recurrent or metastatic.
- Clinical oncologist (radiotherapy)Named in the standard of care for: Locally advanced disease.
- Palliative and supportive care teamNamed in the standard of care for: Prevention.
A second opinion from a centre that treats many similar cases is normal, not rude; the standard of care tells you what to compare it against.
Each row is a setting from the standard of care, in the order it usually arises. Not all will apply to you; your stage and biomarkers decide which do. The guideline grade, where recorded, says how strong the evidence is.
Visual oral examination by trained workers reduced mouth cancer deaths in the Kerala trial; opportunistic examination by dentists elsewhere.
Tobacco and betel quid cessation, alcohol reduction, treatment of premalignant patches.
Wide excision with elective neck dissection when depth of invasion exceeds about 3 to 4 mm; sentinel node biopsy in selected cases.
Resection with neck dissection and free-flap reconstruction, then postoperative radiotherapy, or cisplatin chemoradiation for positive margins or extranodal extension.
Pembrolizumab with or without chemotherapy (KEYNOTE-048); low-cost metronomic methotrexate and celecoxib where access is limited.
Generated from this cancer's standard of care, biomarkers and open problems. Take the group that matches where you are. To tick, add your own and print, open the one-page appointment sheet.
Newly diagnosed
- What is my exact diagnosis, stage, and grade, and which tests established them?Everything else follows from an accurate stage and subtype.
- 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?These results decide eligibility for targeted therapy, immunotherapy, and trials.
- Which subtype is my cancer, and does that change the recommended treatment?Recognised subtypes for this cancer include Oral tongue, Floor of mouth, Buccal mucosa and gingiva.
- Is germline (inherited) genetic testing recommended for me or my family?Inherited variants can change treatment and matter for relatives.
Screening in high-risk populations
- For my situation (screening in high-risk populations), which of the standard options do you recommend and why?Guideline options include: Visual oral examination by trained workers reduced mouth cancer deaths in the Kerala trial; opportunistic examination by dentists elsewhere.
Early disease
- For my situation (early disease), which of the standard options do you recommend and why?Guideline options include: Wide excision with elective neck dissection when depth of invasion exceeds about 3 to 4 mm; sentinel node biopsy in selected cases.
Locally advanced disease
- For my situation (locally advanced disease), which of the standard options do you recommend and why?Guideline options include: Resection with neck dissection and free-flap reconstruction, then postoperative radiotherapy, or cisplatin chemoradiation for positive margins or extranodal extension.
- Am I a candidate for Cisplatin, and what side effects should I expect?Knowing the expected toxicities helps you plan work, family, and supportive care.
Recurrent or metastatic
- For my situation (recurrent or metastatic), which of the standard options do you recommend and why?Guideline options include: Pembrolizumab with or without chemotherapy (KEYNOTE-048); low-cost metronomic methotrexate and celecoxib where access is limited.
- Am I a candidate for Pembrolizumab, Methotrexate, and what side effects should I expect?Knowing the expected toxicities helps you plan work, family, and supportive care.
- How do the results of KEYNOTE-048 and Oral metronomic chemotherapy vs intravenous cisplatin (Tata Memorial) apply to someone like me?Trial populations differ from individual patients; ask how closely you match.
Prevention
- For my situation (prevention), which of the standard options do you recommend and why?Guideline options include: Tobacco and betel quid cessation, alcohol reduction, treatment of premalignant patches.
Any stage
- Are there clinical trials I could join, for example of Pembrolizumab, Nivolumab?Trials are how the next standard of care is set; asking early keeps options open.
- Would a second opinion at a high-volume centre change anything, and can you help arrange it?Rare or high-stakes decisions benefit from a centre that treats many similar patients.
- What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?Supportive care improves quality of life and helps patients complete treatment.
- I read that “Late presentation remains the norm in the highest-incidence countries”. How does that affect my plan?Open problems are where trials and second opinions matter most.
- I read that “Betel quid use is still rising in parts of Asia”. How does that affect my plan?Open problems are where trials and second opinions matter most.
Much of what helps in the first weeks is free if you know to ask: testing, helplines, rides and lodging, second opinions, trial travel.
- Oral cavity cancer (mouth and tongue): the full pageCancer of the mouth and tongue is caused mainly by tobacco, alcohol and betel quid and is usually visible or feelable early, yet often diagnosed late. Surgery is the mainstay, with radiotherapy or chemoradiation after operation for higher-risk disease, and reconstruction to restore speech and swallowing.
- One-page appointment sheetYour questions, the words you may hear, what to bring, and space for the answers. Print it.
- Treatment sequencingWhich treatment tends to follow which, line by line.
- NavigatorStandard of care for your stage, what you have tried, and trials near you.