The first 60 days: Anal high-grade squamous intraepithelial lesions (precursor)
Anal high-grade squamous intraepithelial lesions are the HPV-driven precancer that anal cancer grows from, found by screening people at high risk with cytology and high-resolution anoscopy. The ANCHOR trial showed that treating these lesions, mostly by ablation in the clinic, cuts the number that become anal cancer, so screening and treatment are now recommended for people living with HIV. Below, week by week, is what OnCo's record of Anal high-grade squamous intraepithelial lesions (precursor) 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: Screening, After treatment.
- SurgeonNamed in the standard of care for: Treatment of HSIL.
- Medical oncologistNamed in the standard of care for: Treatment of HSIL, 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.
Anal cytology or high-risk HPV testing followed by high-resolution anoscopy in people living with HIV and other high-risk groups, following the 2024 International Anal Neoplasia Society guidelines.
HPV vaccination, which protects against the HPV types that cause almost all anal cancer.
Office-based ablation (electrocautery, infrared coagulation) for discrete lesions; topical fluorouracil or imiquimod for extensive or perianal disease; excision for lesions where invasion is suspected (ANCHOR).
Repeat high-resolution anoscopy because recurrence is common; biopsy of any lesion that changes or ulcerates.
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 Anal cytology, High-resolution anoscopy with biopsy, p16 immunohistochemistry, HPV 16 typing, HIV status and CD4 count), 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 HSIL, Perianal HSIL, HSIL in people living with HIV.
- Is germline (inherited) genetic testing recommended for me or my family?Inherited variants can change treatment and matter for relatives.
Screening
- For my situation (screening), which of the standard options do you recommend and why?Guideline options include: Anal cytology or high-risk HPV testing followed by high-resolution anoscopy in people living with HIV and other high-risk groups, following the 2024 International Anal Neoplasia Society guidelines.
Treatment of HSIL
- For my situation (treatment of hsil), which of the standard options do you recommend and why?Guideline options include: Office-based ablation (electrocautery, infrared coagulation) for discrete lesions; topical fluorouracil or imiquimod for extensive or perianal disease; excision for lesions where invasion is suspected (ANCHOR).
- Am I a candidate for Fluorouracil (5-FU), and what side effects should I expect?Knowing the expected toxicities helps you plan work, family, and supportive care.
Prevention
- For my situation (prevention), which of the standard options do you recommend and why?Guideline options include: HPV vaccination, which protects against the HPV types that cause almost all anal cancer.
- Am I a candidate for Nonavalent HPV vaccine, and what side effects should I expect?Knowing the expected toxicities helps you plan work, family, and supportive care.
After treatment
- For my situation (after treatment), which of the standard options do you recommend and why?Guideline options include: Repeat high-resolution anoscopy because recurrence is common; biopsy of any lesion that changes or ulcerates.
Any stage
- Are there clinical trials I could join, for example of Circulating tumour HPV DNA (ctHPV-DNA), HPV & HBV vaccination, HPV DNA testing and self-sampling?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 “Most HSIL never progresses, and no marker yet says which lesions to treat and which to watch”. How does that affect my plan?Open problems are where trials and second opinions matter most.
- I read that “High-resolution anoscopy is scarce outside specialist centres”. 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.
- Anal high-grade squamous intraepithelial lesions (precursor): the full pageAnal high-grade squamous intraepithelial lesions are the HPV-driven precancer that anal cancer grows from, found by screening people at high risk with cytology and high-resolution anoscopy. The ANCHOR trial showed that treating these lesions, mostly by ablation in the clinic, cuts the number that become anal cancer, so screening and treatment are now recommended for people living with HIV.
- 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.
- Cervical precancer (CIN, HSIL/LSIL): Abnormal cervical cells caused by HPV that can turn into cancer over 10-20 years.
- HPV status (HPV-positive / HPV-negative): Whether a cancer is caused by human papillomavirus.
- 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.