After bladder cancer treatment

Bladder cancer survivorship is dominated by surveillance rather than by treatment effects: a repeated, invasive, mildly unpleasant test that keeps coming for years. Understanding why the schedule is what it is, and getting the practical side of the test right, is most of what makes it liveable.

• Flexible cystoscopy — a thin camera into the bladder, usually under local anaesthetic gel — is the mainstay. Schedules vary by risk: commonly every three months at first, lengthening over years.
• Urine tests and imaging of the kidneys and ureters are used alongside it, because the same lining runs through the upper urinary tract.
• Ask what your risk category is and what schedule that implies — it makes an intrusive plan feel like a plan.
• Practical things that help: ask about lidocaine gel and how long it needs, empty your bladder beforehand, arrange to be driven if you find it difficult, and say if a previous one was painful — it can be done differently.
• Ask whether any part of it can be done closer to home or less often as time passes.

• Maintenance courses can run over one to three years; ask what your schedule is and what completing it means.
• Urinary frequency, urgency and discomfort for a day or two after each instillation are expected. Fever, joint pains or symptoms lasting longer than that should be reported — BCG occasionally causes a systemic reaction that needs treating.
• Follow the safety instructions you are given about the first hours after instillation.
• Tell any doctor treating you in future that you have had BCG.

• Stopping smoking is the single most effective thing, and support with medication roughly doubles success rates. Ask for a referral rather than relying on willpower.
• Keep well hydrated unless you have been told otherwise.
• Attend every surveillance appointment, including the ones that feel unnecessary — this is a cancer where the schedule genuinely earns its keep.
• Report blood in the urine at any time, even years later, and even once.