John, one of the primary problems with bladder cancer is that it can/and does come back. I assume that you had BCG instillations after your diagnosis. This works very well for some types of bladder cancer and is not so effective for others. The recommended protocol is to have six treatments a week apart, and then maintenance treatments about every three months for up to several years. The statistics show that the chance of recurrence is MUCH less than with just the one series, assuming the type of bladder cancer you have is sensitive to this.
The recommended treatment also has an exam (cystoscopy) every three months for two years, before transitioning to every six months.
Your urologist will do cytology (checking for abnormal cells OR infections) on your urine with every exam. Not all do a FISH test each time if the other tests are negative. Cytology tests are not perfect, and can give both false positive results and false negative results on occasion. This is why doctors need to use all the other tests AND their own experience.
We always recommend that patients seek a second opinion at a center that treats LOTS of bladder cancer, since not all urologists are as familiar with the current practice in this area. The very BEST thing that would happen is that the cancer center would tell you that your doctor has everything well in hand and that you are receiving the very best level of treatment. The other thing you might discover is that you are not receiving the best treatments available. Then you would be able to make some educated decisions about your course of action.
While early, low grade or even high grade bladder cancer is very treatable, it can...and does...return. This is your life you are dealing with, and it is important to have the best care you can get.
If some of us seem a bit "pushy" it is because we have been there/done that...right where you are now...and learned some of this the hard way.
Sara Anne
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