The first 60 days: Localised anal squamous cell carcinoma (stage I to III)
Localised anal cancer is squamous cell cancer of the anal canal that has not spread beyond the pelvis and groin, one of the few cancers cured mainly by chemotherapy and radiotherapy together rather than by surgery. Fluorouracil with mitomycin during radiotherapy has been standard since the ACT II trial; surgery to remove the anus is kept for the minority whose cancer persists or returns. Below, week by week, is what OnCo's record of Localised anal squamous cell carcinoma (stage I to III) 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.
Pelvic MRI, PET-CT, examination of the groins, HIV testing and HPV or p16 status; biopsy of suspicious groin nodes.
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: Staging, Response assessment.
- RadiologistNamed in the standard of care for: Staging.
- SurgeonNamed in the standard of care for: Stage I to III, Persistent or recurrent disease.
- Medical oncologistNamed in the standard of care for: Stage I to III, Persistent or recurrent disease, High-risk locally advanced disease.
- Clinical oncologist (radiotherapy)Named in the standard of care for: Stage I to III, Persistent or recurrent disease, High-risk locally advanced disease.
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.
Intensity-modulated radiotherapy with concurrent fluorouracil (or capecitabine) and mitomycin, dose scaled to stage (ACT II, RTOG 98-11); small perianal tumours may be excised alone.
Trials of dose escalation (PLATO ACT5) and adjuvant nivolumab (EA2165); standard care remains chemoradiotherapy alone.
Clinical assessment at 26 weeks; biopsy only if disease persists or grows, because regression continues for months (ACT II).
Salvage abdominoperineal resection with permanent colostomy; inguinal node dissection or radiotherapy for isolated groin recurrence.
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 HPV and p16 status, T and N stage on MRI and PET-CT, HIV status and CD4 count, Clinical complete response at 26 weeks, Circulating HPV DNA), 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 Stage I anal canal squamous cell carcinoma, Stage II anal squamous cell carcinoma, Stage III node-positive or T4 anal squamous cell carcinoma.
- Is germline (inherited) genetic testing recommended for me or my family?Inherited variants can change treatment and matter for relatives.
Staging
- For my situation (staging), which of the standard options do you recommend and why?Guideline options include: Pelvic MRI, PET-CT, examination of the groins, HIV testing and HPV or p16 status; biopsy of suspicious groin nodes.
Stage I to III
- For my situation (stage i to iii), which of the standard options do you recommend and why?Guideline options include: Intensity-modulated radiotherapy with concurrent fluorouracil (or capecitabine) and mitomycin, dose scaled to stage (ACT II, RTOG 98-11); small perianal tumours may be excised alone.
- Am I a candidate for Fluorouracil (5-FU), Mitomycin C, and what side effects should I expect?Knowing the expected toxicities helps you plan work, family, and supportive care.
- How do the results of ACT II apply to someone like me?Trial populations differ from individual patients; ask how closely you match.
Response assessment
- For my situation (response assessment), which of the standard options do you recommend and why?Guideline options include: Clinical assessment at 26 weeks; biopsy only if disease persists or grows, because regression continues for months (ACT II).
- How do the results of ACT II apply to someone like me?Trial populations differ from individual patients; ask how closely you match.
Persistent or recurrent disease
- For my situation (persistent or recurrent disease), which of the standard options do you recommend and why?Guideline options include: Salvage abdominoperineal resection with permanent colostomy; inguinal node dissection or radiotherapy for isolated groin recurrence.
High-risk locally advanced disease
- For my situation (high-risk locally advanced disease), which of the standard options do you recommend and why?Guideline options include: Trials of dose escalation (PLATO ACT5) and adjuvant nivolumab (EA2165); standard care remains chemoradiotherapy alone.
- Am I a candidate for Nivolumab, and what side effects should I expect?Knowing the expected toxicities helps you plan work, family, and supportive care.
Any stage
- Are there clinical trials I could join, for example of Circulating tumour HPV DNA (ctHPV-DNA), Nivolumab, IMRT / IGRT (modern external beam)?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 “Radiotherapy dose for early and for locally advanced tumours is still being settled in PLATO”. How does that affect my plan?Open problems are where trials and second opinions matter most.
- I read that “About a quarter of patients with locally advanced disease relapse and need major surgery”. 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.
- Localised anal squamous cell carcinoma (stage I to III): the full pageLocalised anal cancer is squamous cell cancer of the anal canal that has not spread beyond the pelvis and groin, one of the few cancers cured mainly by chemotherapy and radiotherapy together rather than by surgery. Fluorouracil with mitomycin during radiotherapy has been standard since the ACT II trial; surgery to remove the anus is kept for the minority whose cancer persists or returns.
- 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.
- Clinical complete response (cCR): No sign of tumour on examination, endoscopy, and MRI after treatment, without surgery to confirm it.
- HPV-positive (p16) head and neck cancer: Throat cancers caused by the human papillomavirus, identified by a p16 stain.
- Chemoradiation (chemoradiotherapy, CRT): Radiotherapy given at the same time as chemotherapy, which sensitises the cancer to radiation.
Every term links to the glossary.