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 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.
- 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.
- Organ preservation (watch-and-wait, bladder-sparing, larynx preservation): Curing a cancer with drugs and radiotherapy so that the organ (rectum, bladder, larynx, limb) does not have to be removed, keeping surgery in reserve for the minority whose cancer regrows.
- Platinum-sensitive / platinum-resistant: Whether a cancer that responded to platinum chemotherapy came back more than six months later (sensitive, so platinum can be used again) or sooner (resistant, so something else is needed).
- 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.
- Maintenance therapy: Ongoing, gentler treatment given after the main course has shrunk the cancer, to hold it in check for as long as possible rather than to shrink it further.
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: TURBT + intravesical BCG; novel intravesical agents for BCG-unresponsive; durvalumab + BCG for high-risk (2026). (Durvalumab, Oncolytic viruses, Cytokines & engineered cytokines)
- MIBC: Neoadjuvant chemo ± durvalumab → cystectomy → ctDNA-guided atezolizumab or nivolumab. (IMvigor011, Atezolizumab, Signatera)
- Metastatic: Enfortumab vedotin + pembrolizumab; erdafitinib (FGFR3); platinum + 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