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Living with cancer· Appointment prep

Appointment sheet: Muscle-invasive and advanced bladder cancer

One page to bring and write on: your details, the questions for Muscle-invasive and advanced bladder cancer 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

Muscle-invasive and advanced bladder cancer

Prepared with OnCo (onco.cc/prep/muscle-invasive-bladder-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

19 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 Cisplatin eligibility, PD-L1 expression, FGFR3 mutations and fusions, Nectin-4 expression, Circulating tumour DNA after cystectomy), 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?
Muscle-invasive, cisplatin-eligible
  1. 5.For my situation (muscle-invasive, cisplatin-eligible), which of the standard options do you recommend and why?
  2. 6.Am I a candidate for Cisplatin, Gemcitabine, Durvalumab or related drugs, and what side effects should I expect?
  3. 7.How do the results of NIAGARA and CheckMate 274 apply to someone like me?
Bladder preservation
  1. 8.For my situation (bladder preservation), which of the standard options do you recommend and why?
  2. 9.Am I a candidate for Cisplatin, and what side effects should I expect?
Metastatic, first line
  1. 10.For my situation (metastatic, first line), which of the standard options do you recommend and why?
  2. 11.Am I a candidate for Enfortumab vedotin, Pembrolizumab, and what side effects should I expect?
  3. 12.How do the results of EV-302 / KEYNOTE-A39 apply to someone like me?
Later lines
  1. 13.For my situation (later lines), which of the standard options do you recommend and why?
  2. 14.Am I a candidate for Erdafitinib, Enfortumab vedotin, and what side effects should I expect?
Any stage
  1. 15.Are there clinical trials I could join, for example of Durvalumab, Erdafitinib, Enfortumab vedotin?
  2. 16.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
  3. 17.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
  4. 18.I read that “Cisplatin-ineligible patients still have fewer options”. How does that affect my plan?
  5. 19.I read that “Choosing between cystectomy and bladder preservation lacks randomised evidence”. How does that affect my plan?

The words I may hear

  • Radical cystectomy: Removing the bladder (and nearby organs) for bladder cancer that has grown into the muscle wall; urine is then diverted through a stoma or a new bladder made of bowel.

Tests and results to bring

Biomarker results to ask for: Cisplatin eligibility (kidney function, hearing, performance status), PD-L1 expression (selects immunotherapy in some settings), FGFR3 mutations and fusions (erdafitinib), Nectin-4 expression (near universal; enfortumab vedotin target), Circulating tumour DNA after cystectomy (adjuvant selection).

Scans and tests linked to this cancer: Urine tests for bladder cancer (cytology, FISH, RNA and methylation).

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