The first 60 days: Oropharyngeal cancer (tonsil and base of tongue)
Cancer of the tonsils and back of the tongue now comes mostly from HPV infection rather than smoking, and behaves like a different disease: it responds well to chemoradiation, most patients are cured, and the research question is how much treatment can safely be removed. Below, week by week, is what OnCo's record of Oropharyngeal cancer (tonsil and base of 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.
Examination and biopsy with p16 and HPV testing, PET-CT, and separate staging for HPV-positive disease.
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.
- RadiologistNamed in the standard of care for: Diagnosis and staging.
- SurgeonNamed in the standard of care for: Early disease.
- Medical oncologistNamed in the standard of care for: Early disease, Locally advanced disease, Recurrent or metastatic.
- Clinical oncologist (radiotherapy)Named in the standard of care for: Early disease, 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.
HPV vaccination of girls and boys; smoking cessation.
Transoral robotic or laser surgery with neck dissection, or radiotherapy alone, chosen by expected function.
Cisplatin chemoradiation (70 Gy); cetuximab only for patients who cannot have cisplatin, since RTOG 1016 and De-ESCALaTE showed it inferior in HPV-positive disease.
Pembrolizumab alone for PD-L1-positive disease or with platinum-fluorouracil (KEYNOTE-048); nivolumab after platinum (CheckMate 141).
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 p16 immunohistochemistry and HPV DNA or RNA, Smoking history, Circulating HPV DNA, PD-L1 combined positive score, 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 HPV-positiveoropharyngeal cancer, HPV-negativeoropharyngeal cancer, Tonsil.
- 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: Examination and biopsy with p16 and HPV testing, PET-CT, and separate staging for HPV-positive disease.
Early disease
- For my situation (early disease), which of the standard options do you recommend and why?Guideline options include: Transoral robotic or laser surgery with neck dissection, or radiotherapy alone, chosen by expected function.
Locally advanced disease
- For my situation (locally advanced disease), which of the standard options do you recommend and why?Guideline options include: Cisplatin chemoradiation (70 Gy); cetuximab only for patients who cannot have cisplatin, since RTOG 1016 and De-ESCALaTE showed it inferior in HPV-positive disease.
- Am I a candidate for Cisplatin, Cetuximab, and what side effects should I expect?Knowing the expected toxicities helps you plan work, family, and supportive care.
- How do the results of RTOG 1016 and De-ESCALaTE HPV apply to someone like me?Trial populations differ from individual patients; ask how closely you match.
Recurrent or metastatic
- For my situation (recurrent or metastatic), which of the standard options do you recommend and why?Guideline options include: Pembrolizumab alone for PD-L1-positive disease or with platinum-fluorouracil (KEYNOTE-048); nivolumab after platinum (CheckMate 141).
- Am I a candidate for Pembrolizumab, Nivolumab, 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 CheckMate 141 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: HPV vaccination of girls and boys; smoking cessation.
Any stage
- Are there clinical trials I could join, for example of De-ESCALaTE HPV, Adaptive radiotherapy (online replanning), HPV & HBV vaccination?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 “How far treatment can be reduced in HPV-positive disease without losing cures”. How does that affect my plan?Open problems are where trials and second opinions matter most.
- I read that “HPV-negative oropharyngeal cancer still has poor outcomes”. 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.
- Oropharyngeal cancer (tonsil and base of tongue): the full pageCancer of the tonsils and back of the tongue now comes mostly from HPV infection rather than smoking, and behaves like a different disease: it responds well to chemoradiation, most patients are cured, and the research question is how much treatment can safely be removed.
- 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.