Appointment sheet
Bladder & urothelial cancer
Prepared with OnCo (onco.cc/prep/urothelial/). 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
40 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 FGFR3, PD-L1, HER2, Nectin-4, ctDNA), 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?
NMIBC
- 5.For my situation (nmibc), which of the standard options do you recommend and why?
- 6.Am I a candidate for Durvalumab, and what side effects should I expect?
MIBC
- 7.For my situation (mibc), which of the standard options do you recommend and why?
- 8.Am I a candidate for Atezolizumab, Signatera, and what side effects should I expect?
- 9.How do the results of IMvigor011 and EV-303 / KEYNOTE-905 apply to someone like me?
Metastatic
- 10.For my situation (metastatic), which of the standard options do you recommend and why?
- 11.Am I a candidate for Enfortumab vedotin, Pembrolizumab, and what side effects should I expect?
- 12.How do the results of EV-302 / KEYNOTE-A39 apply to someone like me?
Diagnosis and surveillance
- 13.For my situation (diagnosis and surveillance), which of the standard options do you recommend and why?
Low / intermediate-risk NMIBC
- 14.For my situation (low / intermediate-risk nmibc), which of the standard options do you recommend and why?
High-risk NMIBC, BCG-naive
- 15.For my situation (high-risk nmibc, bcg-naive), which of the standard options do you recommend and why?
- 16.Am I a candidate for Intravesical BCG, Durvalumab, and what side effects should I expect?
- 17.How do the results of POTOMAC apply to someone like me?
BCG-unresponsive NMIBC (CIS ± papillary)
- 18.For my situation (bcg-unresponsive nmibc (cis ± papillary)), which of the standard options do you recommend and why?
- 19.Am I a candidate for Gemcitabine intravesical system (TAR-200), Nogapendekin alfa inbakicept, Nadofaragene firadenovec or related drugs, and what side effects should I expect?
- 20.How do the results of SunRISe-1 and BOND-003 apply to someone like me?
Muscle-invasive, cisplatin-eligible
- 21.For my situation (muscle-invasive, cisplatin-eligible), which of the standard options do you recommend and why?
- 22.Am I a candidate for Enfortumab vedotin, Pembrolizumab, Durvalumab, and what side effects should I expect?
- 23.How do the results of EV-304 / KEYNOTE-B15 and NIAGARA apply to someone like me?
Muscle-invasive, cisplatin-ineligible
- 24.For my situation (muscle-invasive, cisplatin-ineligible), which of the standard options do you recommend and why?
- 25.Am I a candidate for Enfortumab vedotin, Pembrolizumab, and what side effects should I expect?
- 26.How do the results of EV-303 / KEYNOTE-905 apply to someone like me?
After cystectomy (no perioperative IO)
- 27.For my situation (after cystectomy (no perioperative io)), which of the standard options do you recommend and why?
- 28.Am I a candidate for Nivolumab, Atezolizumab, Signatera, and what side effects should I expect?
- 29.How do the results of CheckMate 274 and IMvigor011 apply to someone like me?
Metastatic, first line
- 30.For my situation (metastatic, first line), which of the standard options do you recommend and why?
- 31.Am I a candidate for Enfortumab vedotin, Pembrolizumab, Avelumab or related drugs, and what side effects should I expect?
- 32.How do the results of EV-302 / KEYNOTE-A39 and JAVELIN Bladder 100 apply to someone like me?
Metastatic, later lines
- 33.For my situation (metastatic, later lines), which of the standard options do you recommend and why?
- 34.Am I a candidate for Erdafitinib, Disitamab vedotin, Sacituzumab tirumotecan or related drugs, and what side effects should I expect?
- 35.How do the results of THOR apply to someone like me?
Any stage
- 36.Are there clinical trials I could join, for example of Izalontamab brengitecan, AK146D1, Disitamab vedotin, Intismeran autogene?
- 37.Would a second opinion at a high-volume centre change anything, and can you help arrange it?
- 38.What supportive care (symptom control, nutrition, exercise, mental health, financial help) is available from the start?
- 39.I read that “BCG supply”. How does that affect my plan?
- 40.I read that “Bladder preservation strategies”. How does that affect my plan?
The words I may hear
- Non-muscle-invasive vs muscle-invasive bladder cancer (NMIBC / MIBC): Bladder cancer is divided by whether it has grown into the bladder's muscle wall.
- BCG-unresponsive: The FDA's definition of early bladder cancer that has failed adequate BCG treatment, the population in which most new bladder drugs are first approved.
- Intravesical therapy (BCG and bladder instillations): Putting a drug directly into the bladder through a catheter and leaving it for an hour or two, so it treats the lining without going round the body.
- Transurethral resection of bladder tumour (TURBT): Shaving a bladder tumour away from the inside using a scope passed up the urethra.
- Stoma (colostomy, ileostomy, urostomy): An opening made in the abdominal wall so bowel or urine empties into a bag; may be temporary while a join heals, or permanent when the rectum, anus or bladder has been removed.
- Bladder cancer after cyclophosphamide: Cyclophosphamide is one of the few cancer drugs that has been shown to cause a specific solid cancer, in the bladder, and the risk depends steeply on the total dose given.
- 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.
- FGFR3 alterations (bladder cancer): FGFR3 is a growth-receptor gene mutated or fused in about a fifth of advanced bladder cancers and most low-grade early ones.
- Stopping smoking: The single largest thing anyone can do about lung cancer, before or after a diagnosis.
- TERT promoter mutation: A mutation that keeps the cell's immortality enzyme switched on.
Tests and results to bring
Diagnosis and surveillance: Cystoscopy (white or blue light) and TURBT with muscle in the specimen; re-resection for T1; CT urography; urine cytology; surveillance cystoscopy every 3-12 months by risk.
Biomarker results to ask for: FGFR3, PD-L1 (limited utility now), HER2, Nectin-4 (not required), ctDNA (Signatera), Stage and grade (NMIBC risk group; MIBC), BCG-unresponsive status (FDA definition), FGFR3/FGFR2 alterations (erdafitinib), Nectin-4 (not required for enfortumab), HER2 (disitamab vedotin trials), PD-L1 (no longer decisive after EV-302), ctDNA (Signatera; IMvigor011 selection), Urine tumour DNA (surveillance, research), Cisplatin eligibility (renal function, hearing, neuropathy, performance status).
Scans and tests linked to this cancer: Companion diagnostics, CT (computed tomography), Cystoscopy, blue-light imaging & TURBT, Cytogenetics and FISH, Histopathology & immunohistochemistry, Liquid biopsy (ctDNA).
Bring copies of scan reports, pathology and blood results, and a list of every medicine and supplement.
The treatments I may be offered
- Low / intermediate-risk NMIBC: TURBT with single immediate intravesical chemotherapy instillation; intermediate risk adds 1 year of intravesical chemotherapy (gemcitabine/mitomycin) or BCG. (Cystoscopy, blue-light imaging & TURBT, Intravesical therapy (BCG, chemotherapy, devices, gene and viral therapy))
- Muscle-invasive, cisplatin-eligible: Perioperative EV + pembrolizumab (EV-304, positive 2025; filing) or neoadjuvant durvalumab + gemcitabine-cisplatin with adjuvant durvalumab (NIAGARA, approved 2025), then radical cystectomy with lymph node dissection; trimodality bladder preservation (TURBT + chemoradiation) for selected patients. (Enfortumab vedotin, Pembrolizumab, EV-304 / KEYNOTE-B15, Durvalumab, NIAGARA, IMRT / IGRT (modern external beam), Enfortumab vedotin + pembrolizumab across the bladder cancer continuum)
- Muscle-invasive, cisplatin-ineligible: Perioperative EV + pembrolizumab with cystectomy (EV-303, approved Nov 2025); or cystectomy alone / chemoradiation. (Enfortumab vedotin, Pembrolizumab, EV-303 / KEYNOTE-905)
- High-risk NMIBC, BCG-naive: TURBT then BCG induction and 1-3 years maintenance; durvalumab + BCG approved May 2026 (POTOMAC); radical cystectomy for very high-risk (T1 + CIS, variant histology). (Intravesical BCG, Durvalumab, POTOMAC, Durvalumab + BCG in BCG-naive high-risk NMIBC)
- NMIBC: Non-muscle-invasive: transurethral resection (TURBT) then intravesical BCG; novel intravesical agents for BCG-unresponsive disease; durvalumab + BCG for high-risk disease (2026). (Non-muscle-invasive vs muscle-invasive bladder cancer (NMIBC / MIBC), Transurethral resection of bladder tumour (TURBT), Intravesical therapy (BCG and bladder instillations), Durvalumab, Oncolytic viruses, Cytokines & engineered cytokines)
- MIBC: Muscle-invasive: neoadjuvant chemotherapy ± durvalumab → radical cystectomy → ctDNA-guided atezolizumab or nivolumab; perioperative enfortumab vedotin + pembrolizumab for cisplatin-ineligible patients (EV-303), with EV-304 positive in cisplatin-eligible patients. (Non-muscle-invasive vs muscle-invasive bladder cancer (NMIBC / MIBC), Radical cystectomy, IMvigor011, Atezolizumab, Signatera, EV-303 / KEYNOTE-905, EV-304 / KEYNOTE-B15)
- Metastatic: Enfortumab vedotin (an antibody-drug conjugate) + pembrolizumab (immunotherapy); erdafitinib for FGFR3 alterations; platinum chemotherapy + nivolumab. (EV-302 / KEYNOTE-A39, Enfortumab vedotin, Pembrolizumab)
- BCG-unresponsive NMIBC (CIS ± papillary): Radical cystectomy remains the oncologic gold standard; bladder-sparing options: TAR-200 (Inlexzo, 2025), N-803 + BCG (Anktiva, 2024), nadofaragene firadenovec (2022), pembrolizumab (2020); cretostimogene in registration. (Gemcitabine intravesical system (TAR-200), Nogapendekin alfa inbakicept, Nadofaragene firadenovec, Pembrolizumab, Cretostimogene grenadenorepvec, SunRISe-1, BOND-003, QUILT 3.032)
- After cystectomy (no perioperative IO): Adjuvant nivolumab for high-risk pathology (CheckMate 274); or ctDNA-guided adjuvant atezolizumab (IMvigor011, approved 2026). (Nivolumab, CheckMate 274, Atezolizumab, IMvigor011, Signatera)
- Metastatic, first line: Enfortumab vedotin + pembrolizumab (EV-302); if contraindicated, platinum-gemcitabine followed by avelumab maintenance (JAVELIN Bladder 100) or nivolumab + gemcitabine-cisplatin (CheckMate 901). (Enfortumab vedotin, Pembrolizumab, EV-302 / KEYNOTE-A39, Avelumab, JAVELIN Bladder 100, Nivolumab)
- Metastatic, later lines: Erdafitinib if FGFR3-altered (THOR); platinum chemotherapy if not yet given; disitamab vedotin ± toripalimab (HER2, China); sacituzumab govitecan (US indication withdrawn 2024); trials of TROP2/HER2/bispecific ADCs and sac-TMT. (Erdafitinib, THOR, Disitamab vedotin, Sacituzumab tirumotecan, Izalontamab brengitecan, AK146D1)
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