The first 60 days: Anal cancer (squamous cell carcinoma)
An HPV-caused cancer of the anal canal that is usually cured without surgery by combined chemotherapy and radiation. Prevention (HPV vaccination, screening of high-risk groups) and immunotherapy for advanced disease are the new fronts. Below, week by week, is what OnCo's record of Anal cancer (squamous cell carcinoma) 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: Precancer (HSIL) in people with HIV.
- SurgeonNamed in the standard of care for: Precancer (HSIL) in people with HIV, Localised (stage I-III), Persistent or recurrent local disease.
- Medical oncologistNamed in the standard of care for: Precancer (HSIL) in people with HIV, Localised (stage I-III), Metastatic, first line, Metastatic, later lines.
- Clinical oncologist (radiotherapy)Named in the standard of care for: Localised (stage I-III).
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.
- 1.Localised (stage I-III)NCCN category Category 1 (5-FU/mitomycin + RT), NCCN Guidelines: Anal Carcinoma
Definitive IMRT chemoradiation with concurrent mitomycin + 5-FU (or capecitabine); small T1 perianal lesions may be excised; assess response at 26 weeks before declaring failure (ACT II).
Screening with anal cytology / high-resolution anoscopy and treatment of HSIL (ablation, topical therapy) reduces progression to cancer by 57% (ANCHOR).
Salvage abdominoperineal resection with permanent colostomy; flap reconstruction.
Retifanlimab + carboplatin-paclitaxel (POD1UM-303, PFS and OS benefit); carboplatin-paclitaxel alone if immunotherapy contraindicated.
Nivolumab or pembrolizumab if not previously given; clinical trials.
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 / p16 status, HIV status and CD4 count, T and N stage, PD-L1, ctHPV 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 Anal canal SCC, Perianal skin SCC, HPV-negative anal SCC.
- Is germline (inherited) genetic testing recommended for me or my family?Inherited variants can change treatment and matter for relatives.
Precancer (HSIL) in people with HIV
- For my situation (precancer (hsil) in people with hiv), which of the standard options do you recommend and why?Guideline options include: Screening with anal cytology / high-resolution anoscopy and treatment of HSIL (ablation, topical therapy) reduces progression to cancer by 57% (ANCHOR).
Localised (stage I-III)
- For my situation (localised (stage i-iii)), which of the standard options do you recommend and why?Guideline options include: Definitive IMRT chemoradiation with concurrent mitomycin + 5-FU (or capecitabine); small T1 perianal lesions may be excised; assess response at 26 weeks before declaring failure (ACT II).
- Am I a candidate for Mitomycin C, Fluorouracil (5-FU), and what side effects should I expect?Knowing the expected toxicities helps you plan work, family, and supportive care.
Persistent or recurrent local disease
- For my situation (persistent or recurrent local disease), which of the standard options do you recommend and why?Guideline options include: Salvage abdominoperineal resection with permanent colostomy; flap reconstruction.
Metastatic, first line
- For my situation (metastatic, first line), which of the standard options do you recommend and why?Guideline options include: Retifanlimab + carboplatin-paclitaxel (POD1UM-303, PFS and OS benefit); carboplatin-paclitaxel alone if immunotherapy contraindicated.
- Am I a candidate for Retifanlimab, Carboplatin, Paclitaxel / nab-paclitaxel, and what side effects should I expect?Knowing the expected toxicities helps you plan work, family, and supportive care.
Metastatic, later lines
- For my situation (metastatic, later lines), which of the standard options do you recommend and why?Guideline options include: Nivolumab or pembrolizumab if not previously given; clinical trials.
- Am I a candidate for Nivolumab, Pembrolizumab, 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 Retifanlimab, Circulating tumour HPV DNA (ctHPV-DNA), 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 “Screening programmes for high-risk groups exist almost nowhere despite ANCHOR”. How does that affect my plan?Open problems are where trials and second opinions matter most.
- I read that “Late toxicity of pelvic chemoradiation (bowel, sexual, bone)”. How does that affect my plan?Open problems are where trials and second opinions matter most.
Trials open now for this cancer in OnCo, largest phase first. Joining a trial is a decision like any other: ask what the comparison arm is, whether a placebo is used, and what happens if you leave. The cancer page searches ClinicalTrials.gov live for more.
Much of what helps in the first weeks is free if you know to ask: testing, helplines, rides and lodging, second opinions, trial travel.
- Anal cancer (squamous cell carcinoma): the full pageAn HPV-caused cancer of the anal canal that is usually cured without surgery by combined chemotherapy and radiation. Prevention (HPV vaccination, screening of high-risk groups) and immunotherapy for advanced disease are the new fronts.
- 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.
- Radiation dermatitis (skin reaction): Redness, dryness, itching and sometimes peeling of the skin in the treated area, building up over the course and settling a few weeks after it ends.
- HPV-positive (p16) head and neck cancer: Throat cancers caused by the human papillomavirus, identified by a p16 stain.
Every term links to the glossary.