Bladder cancer home

Preparing for My Visit

Walking in prepared helps you get the most from a short visit. Pick the kind of visit you have coming up. Each gives you a bring-this checklist and a question list you can print and write on. There is nowhere here to upload anything — you request copies of your own reports from the office and bring them yourself.

Good for any visit: bring a current list of your medicines and allergies, note any blood thinners, bring your reading glasses, and bring a support person or someone who can take notes. Ask the office ahead of time for copies of your reports so you have them in hand.

Which visit is this?

New bladder tumor Pathology follow-up Starting bladder medicine Recurrence visit BCG-unresponsive options Cystectomy consult Medical oncology consult

New bladder tumor

Bring this

Copies of any scans or reports done so far (ask the office for them)
Your medicine and allergy list, noting any blood thinners
A note of your symptoms and when they started

Questions to ask

What did you find, and what are the next steps?
Will I need a procedure to remove or biopsy it, and how is that done?
What should I do about my blood thinners before a procedure?
What can I expect during recovery?
When will we know more, and how will you reach me?

Pathology follow-up (after a tumor removal)

Bring this

A copy of your pathology report if the office can provide it
Your notes on how recovery has gone (bleeding, burning, any problems)
The pathology decoder if any words are unfamiliar

Questions to ask

What type of cancer is it, and what is the grade?
What is the stage — surface only, or deeper? Was muscle in the sample?
Is there any CIS or any unusual (variant) type?
What is my risk group?
Do I need a repeat TURBT?
What treatment do you recommend, and what are my options?
How often will I need cystoscopy checks going forward?

Starting medicine placed in the bladder

Bring this

Your medicine and allergy list
Your calendar, to schedule the course of treatments
Questions from the starting-treatments guide

Questions to ask

Which medicine am I getting, and why that one?
How many treatments, how often, and over how long?
What should I do before each visit (fluids, caffeine)?
What are the exact after-treatment precautions at home for this medicine?
What side effects are expected, and which mean I should call?
What happens if I miss or need to move a treatment?

Recurrence visit

Bring this

Your history of past tumors and treatments, as best you have it
Copies of recent cystoscopy or pathology notes if available
A note of any new symptoms

Questions to ask

Is this recurrence low grade or high grade? What stage?
Is it in the same place or somewhere new?
Does this change my risk group or my treatment?
What are my options now, and what do you recommend?
If I have had BCG, has it stopped working — and what does that mean?
Do we need to look deeper or repeat any procedure?

BCG-unresponsive options visit

This is a big decision-making visit. These questions help you compare the newer bladder-sparing options against removing the bladder. See the When BCG didn't work cards to prepare.

Bring this

Your BCG history — how many courses and when, as best you know
Copies of your most recent pathology and cystoscopy notes
The treatment cards or your printed questions
A support person — there is a lot to take in

Questions to ask

What exactly is my stage, grade, and CIS status right now?
Do I meet the definition of "BCG-unresponsive"?
Which bladder-sparing options fit my specific case, and why?
Are there clinical trials I qualify for, here or nearby?
How does removing the bladder (cystectomy) compare for me?
How will we know if an option is working, and what is the backup plan?

Cystectomy consult

See the cystectomy and urinary diversion guide to prepare for this one.

Bring this

Your medicine and allergy list, and any other health conditions
Questions about the diversion choices
A support person to help remember details

Questions to ask

Which diversion types am I a candidate for, and which do you recommend — and why?
What would daily life and upkeep look like with each choice?
Can I meet an ostomy nurse before surgery?
Do you use an enhanced-recovery program?
How long is the hospital stay and recovery likely to be for me?
How will this affect intimacy, and what can help?
Will I need chemotherapy before or after surgery?

Medical oncology consult

A medical oncologist is a cancer doctor who manages treatments given through the body, such as chemotherapy or immunotherapy given in a vein. You may see one alongside your urologic oncologist.

Bring this

Copies of your pathology, scans, and any prior treatment records
Your full medicine and allergy list and other health conditions
A support person and something to take notes with

Questions to ask

What is the goal of treatment in my case?
What treatment do you recommend, and what are the alternatives?
Would any treatment come before or after surgery?
What side effects should I expect, and how are they managed?
How will we know if it is working?
Are there clinical trials that fit my situation?
How do you and my urologist coordinate my care?