The first 60 days: Lip cancer
Cancer of the lip is really a skin cancer of the sun-exposed lower lip, usually found early because it can be seen. A small operation or radiotherapy cures most people, and reconstruction keeps the mouth working. Below, week by week, is what OnCo's record of Lip 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.
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: Large, thick or node-positive disease.
- SurgeonNamed in the standard of care for: Early disease, Large, thick or node-positive disease.
- Medical oncologistNamed in the standard of care for: Early disease, Large, thick or node-positive disease, Unresectable or metastatic.
- Clinical oncologist (radiotherapy)Named in the standard of care for: Early disease, Large, thick or node-positive 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.
Sun protection of the lips, smoking cessation, and treatment of actinic cheilitis.
Wedge or V excision with local flap reconstruction, or radiotherapy (external beam or brachytherapy) for commissure tumours or unfit patients.
Cemiplimab as for cutaneous squamous cell carcinoma, or pembrolizumab-based treatment as for head and neck squamous cell carcinoma.
- 4.Large, thick or node-positive diseaseNCCN category Category 2A, NCCN Guidelines: Head and Neck Cancers
Resection with flap reconstruction, sentinel node biopsy or neck dissection, and postoperative radiotherapy; cisplatin for extranodal extension or positive margins.
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 Tumour thickness and depth, Perineural invasion, Margin status, Immunosuppression, PD-L1), 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 Lower lip squamous cell carcinoma, Upper lip cancer, Commissurecancer.
- Is germline (inherited) genetic testing recommended for me or my family?Inherited variants can change treatment and matter for relatives.
Early disease
- For my situation (early disease), which of the standard options do you recommend and why?Guideline options include: Wedge or V excision with local flap reconstruction, or radiotherapy (external beam or brachytherapy) for commissure tumours or unfit patients.
Large, thick or node-positive disease
- For my situation (large, thick or node-positive disease), which of the standard options do you recommend and why?Guideline options include: Resection with flap reconstruction, sentinel node biopsy or neck dissection, and postoperative radiotherapy; cisplatin 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.
Unresectable or metastatic
- For my situation (unresectable or metastatic), which of the standard options do you recommend and why?Guideline options include: Cemiplimab as for cutaneous squamous cell carcinoma, or pembrolizumab-based treatment as for head and neck squamous cell carcinoma.
- Am I a candidate for Cemiplimab, Pembrolizumab, 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 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: Sun protection of the lips, smoking cessation, and treatment of actinic cheilitis.
Any stage
- Are there clinical trials I could join, for example of Cemiplimab?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 “Lip cancer in outdoor workers in sunny countries is under-recognised and under-protected”. How does that affect my plan?Open problems are where trials and second opinions matter most.
- I read that “Function and appearance after resection of more than half the lip”. 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.
- Lip cancer: the full pageCancer of the lip is really a skin cancer of the sun-exposed lower lip, usually found early because it can be seen. A small operation or radiotherapy cures most people, and reconstruction keeps the mouth working.
- 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.
- Chemoradiation (chemoradiotherapy, CRT): Radiotherapy given at the same time as chemotherapy, which sensitises the cancer to radiation.
Every term links to the glossary.