Appointment sheet
Anal cancer (squamous cell carcinoma)
Prepared with OnCo (onco.cc/prep/anal/). 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
19 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 HPV / p16 status, HIV status and CD4 count, T and N stage, PD-L1, ctHPV DNA), 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?
Precancer (HSIL) in people with HIV
- 5.For my situation (precancer (hsil) in people with hiv), which of the standard options do you recommend and why?
- 6.How do the results of ANCHOR apply to someone like me?
Localised (stage I-III)
- 7.For my situation (localised (stage i-iii)), which of the standard options do you recommend and why?
- 8.Am I a candidate for Mitomycin C, Fluorouracil (5-FU), and what side effects should I expect?
Persistent or recurrent local disease
- 9.For my situation (persistent or recurrent local disease), which of the standard options do you recommend and why?
Metastatic, first line
- 10.For my situation (metastatic, first line), which of the standard options do you recommend and why?
- 11.Am I a candidate for Retifanlimab, Carboplatin, Paclitaxel / nab-paclitaxel, and what side effects should I expect?
- 12.How do the results of POD1UM-303/InterAACT-2 apply to someone like me?
Metastatic, later lines
- 13.For my situation (metastatic, later lines), which of the standard options do you recommend and why?
- 14.Am I a candidate for Nivolumab, Pembrolizumab, and what side effects should I expect?
Any stage
- 15.Are there clinical trials I could join, for example of Retifanlimab, Circulating tumour HPV DNA (ctHPV-DNA), HPV & HBV vaccination?
- 16.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
- 17.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
- 18.I read that “Screening programmes for high-risk groups exist almost nowhere despite ANCHOR”. How does that affect my plan?
- 19.I read that “Late toxicity of pelvic chemoradiation (bowel, sexual, bone)”. How does that affect my plan?
The words I may hear
- 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.
- 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.
Tests and results to bring
Biomarker results to ask for: HPV / p16 status, HIV status and CD4 count, T and N stage (MRI, PET-CT), PD-L1 (not required), ctHPV DNA (emerging), Anal cytology / high-resolution anoscopy (screening in high-risk groups).
Scans and tests linked to this cancer: DPYD genotyping and DPD phenotyping before fluoropyrimidines, HPV DNA testing and self-sampling, Circulating tumour HPV DNA (ctHPV-DNA), Colposcopes and digital cervical screening devices (DYSIS, EVA System, AVE).
Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.
The treatments I may be offered
- Localised (stage I-III): 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). (Mitomycin C, Fluorouracil (5-FU), IMRT / IGRT (modern external beam))
- Precancer (HSIL) in people with HIV: Screening with anal cytology / high-resolution anoscopy and treatment of HSIL (ablation, topical therapy) reduces progression to cancer by 57% (ANCHOR). (HPV DNA testing and self-sampling, Thermal ablation and cryotherapy for cervical precancer, HPV & HBV vaccination, ANCHOR)
- Persistent or recurrent local disease: Salvage abdominoperineal resection with permanent colostomy; flap reconstruction. (Robotic & minimally invasive surgery)
- Metastatic, first line: Retifanlimab + carboplatin-paclitaxel (POD1UM-303, PFS and OS benefit); carboplatin-paclitaxel alone if immunotherapy contraindicated. (Retifanlimab, Carboplatin, Paclitaxel / nab-paclitaxel, POD1UM-303/InterAACT-2)
- Metastatic, later lines: Nivolumab or pembrolizumab if not previously given; clinical trials. (Nivolumab, Pembrolizumab)
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