Appointment sheet
Anal high-grade squamous intraepithelial lesions (precursor)
Prepared with OnCo (onco.cc/prep/anal-hsil-precursor/). Orientation, not medical advice; your team knows your case.
My details
Name
Date of appointment
Hospital and clinician
Who is coming with me
What I know, what is unclear, changes to discuss
Saved in this browserWhat I know so far
What is unclear to me
Changes since last time
My questions
15 on the sheetNewly diagnosed
- 1.What is my exact diagnosis, stage, and grade, and which tests established them?
- 2.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?
- 3.Which subtype is my cancer, and does that change the recommended treatment?
- 4.Is germline (inherited) genetic testing recommended for me or my family?
Screening
- 5.For my situation (screening), which of the standard options do you recommend and why?
Treatment of HSIL
- 6.For my situation (treatment of hsil), which of the standard options do you recommend and why?
- 7.Am I a candidate for Fluorouracil (5-FU), and what side effects should I expect?
Prevention
- 8.For my situation (prevention), which of the standard options do you recommend and why?
- 9.Am I a candidate for Nonavalent HPV vaccine, and what side effects should I expect?
After treatment
- 10.For my situation (after treatment), which of the standard options do you recommend and why?
Any stage
- 11.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?
- 12.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
- 13.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
- 14.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?
- 15.I read that “High-resolution anoscopy is scarce outside specialist centres”. How does that affect my plan?
The words I may hear
- 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.
Tests and results to bring
Biomarker results to ask for: Anal cytology (screening), High-resolution anoscopy with biopsy (diagnosis), p16 immunohistochemistry (confirms HSIL), HPV 16 typing (highest progression risk, investigational triage), HIV status and CD4 count, Host and viral DNA methylation markers (investigational).
Scans and tests linked to this cancer: HPV DNA testing and self-sampling, Circulating tumour HPV DNA (ctHPV-DNA).
Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.
The treatments I may be offered
- Screening: 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 DNA testing and self-sampling, HPV-positive (p16) head and neck cancer, Circulating tumour HPV DNA (ctHPV-DNA))
- Prevention: HPV vaccination, which protects against the HPV types that cause almost all anal cancer. (HPV & HBV vaccination, Nonavalent HPV vaccine)
- Treatment of HSIL: 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). (Thermal ablation and cryotherapy for cervical precancer, Fluorouracil (5-FU))
- After treatment: Repeat high-resolution anoscopy because recurrence is common; biopsy of any lesion that changes or ulcerates. (HPV DNA testing and self-sampling, HPV-positive (p16) head and neck cancer)
From the standard of care recorded for this cancer; which apply depends on your stage and biomarkers. Ask which the team recommends and why.
Answers and next steps
Saved in this browserWhat I was told
Agreed next steps, dates and who to call