The first 60 days: Oral tongue and floor of mouth cancer
Cancer of the front of the tongue or the floor of the mouth is treated first with surgery, and a Tata Memorial trial settled that the neck lymph nodes should be removed at the same operation even when scans look clear. How deep the tumour has grown is now the number that decides staging and the need to treat the neck. Below, week by week, is what OnCo's record of Oral tongue and floor of mouth cancer 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.
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.
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: Diagnosis and staging, Primary treatment (T1 to T2, clinically node-negative).
- RadiologistNamed in the standard of care for: Diagnosis and staging.
- SurgeonNamed in the standard of care for: Primary treatment (T1 to T2, clinically node-negative), Locally advanced (T3 to T4 or node-positive).
- Medical oncologistNamed in the standard of care for: Diagnosis and staging, Locally advanced (T3 to T4 or node-positive), Recurrent or metastatic.
- Clinical oncologist (radiotherapy)Named in the standard of care for: Diagnosis and staging, Locally advanced (T3 to T4 or node-positive).
- 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.
Tobacco, alcohol and betel quid cessation; treatment of leukoplakia and erythroplakia; oral examination in high-risk people.
- 2.Locally advanced (T3 to T4 or node-positive)NCCN category Category 1 (chemoradiation for extranodal extension or positive margins), NCCN Guidelines: Head and Neck Cancers
Resection with neck dissection and free-flap reconstruction, then postoperative radiotherapy, or cisplatin chemoradiation for extranodal extension or positive margins.
- 3.Primary treatment (T1 to T2, clinically node-negative)NCCN category Category 1 (elective neck dissection), NCCN Guidelines: Head and Neck Cancers
Partial glossectomy or floor-of-mouth resection with at least 5 mm margins and elective neck dissection (Tata Memorial trial); sentinel node biopsy as an alternative in small tumours.
Pembrolizumab alone or with platinum-fluorouracil (KEYNOTE-048); oral metronomic methotrexate-celecoxib where resources are 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, Worst pattern of invasion and perineural invasion, Margin status, Extranodal extension, TP53 mutation), 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 tonguesquamous cell carcinoma, Floor of mouth squamous cell carcinoma, Tongue cancer in young non-smokers.
- Is germline (inherited) genetic testing recommended for me or my family?Inherited variants can change treatment and matter for relatives.
Diagnosis and staging
- For my situation (diagnosis and staging), which of the standard options do you recommend and why?Guideline options include: 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.
Primary treatment (T1 to T2, clinically node-negative)
- For my situation (primary treatment (t1 to t2, clinically node-negative)), which of the standard options do you recommend and why?Guideline options include: Partial glossectomy or floor-of-mouth resection with at least 5 mm margins and elective neck dissection (Tata Memorial trial); sentinel node biopsy as an alternative in small tumours.
- How do the results of Elective vs therapeutic neck dissection in node-negative oral cancer (Tata Memorial) apply to someone like me?Trial populations differ from individual patients; ask how closely you match.
Locally advanced (T3 to T4 or node-positive)
- For my situation (locally advanced (t3 to t4 or node-positive)), 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 extranodal extension or positive margins.
- 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 alone or with platinum-fluorouracil (KEYNOTE-048); oral metronomic methotrexate-celecoxib where resources are 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, alcohol and betel quid cessation; treatment of leukoplakia and erythroplakia; oral examination in high-risk people.
Any stage
- Are there clinical trials I could join, for example of Pembrolizumab, KEYNOTE-689, Sentinel lymph node biopsy, NIVOPOSTOP (GORTEC 2018-01)?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 “Why tongue cancer is rising in young non-smokers”. How does that affect my plan?Open problems are where trials and second opinions matter most.
- I read that “Whether sentinel node biopsy can replace elective neck dissection safely”. 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 tongue and floor of mouth cancer: the full pageCancer of the front of the tongue or the floor of the mouth is treated first with surgery, and a Tata Memorial trial settled that the neck lymph nodes should be removed at the same operation even when scans look clear. How deep the tumour has grown is now the number that decides staging and the need to treat the neck.
- 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.
- 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.
Every term links to the glossary.