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Living with cancer· Appointment prep

Appointment sheet: Localised anal squamous cell carcinoma (stage I to III)

One page to bring and write on: your details, the questions for Localised anal squamous cell carcinoma (stage I to III) plus your own, the words you may hear, what to bring, the treatments the standard of care names, and room for the answers and agreed next steps. What you type stays in this browser. Print it or save it as a PDF. New to all this? Start with the first 60 days. Orientation, not medical advice.

Tick the questions to print

All of this cancer's questions start ticked. Untick what does not apply; ticks are kept in this browser. .

Your own questions

Shared with the prep pack, so questions you add there appear here too.

Print or save as PDF

Use (or Ctrl+P, Cmd+P on a Mac). To keep a copy, choose Save as PDF as the destination in the print dialog. Only the sheet prints; the controls stay on screen. Your typed notes print where you typed them; empty fields print as ruled lines to write on.

Appointment sheet

Localised anal squamous cell carcinoma (stage I to III)

Prepared with OnCo (onco.cc/prep/localised-anal-cancer/). 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 browser
What I know so far
What is unclear to me
Changes since last time

My questions

18 on the sheet
Newly diagnosed
  1. 1.What is my exact diagnosis, stage, and grade, and which tests established them?
  2. 2.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?
  3. 3.Which subtype is my cancer, and does that change the recommended treatment?
  4. 4.Is germline (inherited) genetic testing recommended for me or my family?
Staging
  1. 5.For my situation (staging), which of the standard options do you recommend and why?
Stage I to III
  1. 6.For my situation (stage i to iii), which of the standard options do you recommend and why?
  2. 7.Am I a candidate for Fluorouracil (5-FU), Mitomycin C, and what side effects should I expect?
  3. 8.How do the results of ACT II apply to someone like me?
Response assessment
  1. 9.For my situation (response assessment), which of the standard options do you recommend and why?
  2. 10.How do the results of ACT II apply to someone like me?
Persistent or recurrent disease
  1. 11.For my situation (persistent or recurrent disease), which of the standard options do you recommend and why?
High-risk locally advanced disease
  1. 12.For my situation (high-risk locally advanced disease), which of the standard options do you recommend and why?
  2. 13.Am I a candidate for Nivolumab, and what side effects should I expect?
Any stage
  1. 14.Are there clinical trials I could join, for example of Circulating tumour HPV DNA (ctHPV-DNA), Nivolumab, IMRT / IGRT (modern external beam)?
  2. 15.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
  3. 16.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
  4. 17.I read that “Radiotherapy dose for early and for locally advanced tumours is still being settled in PLATO”. How does that affect my plan?
  5. 18.I read that “About a quarter of patients with locally advanced disease relapse and need major surgery”. How does that affect my plan?

The words I may hear

Tests and results to bring

Staging: Pelvic MRI, PET-CT, examination of the groins, HIV testing and HPV or p16 status; biopsy of suspicious groin nodes.

Biomarker results to ask for: HPV and p16 status (favourable), T and N stage on MRI and PET-CT, HIV status and CD4 count, Clinical complete response at 26 weeks (ACT II), Circulating HPV DNA (investigational), PD-L1 (not required).

Scans and tests linked to this cancer: MRI, PET/CT, 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

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 browser
What I was told
Agreed next steps, dates and who to call