I know exactly how you feel...sort of like a Mac Truck hit you in the back! I joke (only sort of) that I didn't even know I had a bladder until this happened. So much has happened so fast that it is hard to adapt, but you will.
First, the GOOD things....your GP was right on it...too often with women, even with hysterectomy, they just shrug it off. Yours got you to a urologist right away which is GREAT. Second, the type of bladder cancer that you have, a low grade papillary form, is the best news you could have IF you are going to have bladder cancer.
The not-so-good...it IS bladder cancer. And your urologist was absolutely correct, it has a bad habit of sometimes coming back. But not always. The usual protocol is for cystoscopy every three months for two years, then every six months until five years have passed and then annually forever. But please remember, IT DOES NOT ALWAYS REOCCUR! I have now gone 9 years without. Yes, you do get a bit nervous when the exam time rolls around, but you really tend to forget about it in between. My next exam is marked on the calendar for April 3, and yes, I am starting to think about it, but not nearly the way I did 9 years ago.
You really do not want to have your bladder removed unless it is absolutely necessary....and it may never happen for you. This is truly MAJOR surgery with a long recovery and adaptation time. People do live full lives without a bladder but it is not a walk-in-the-park. And no competent urologist would agree to this when it is most likely completely unnecessary.
IF it returns several times, your urologist would most likely recommend a series of BCG treatments. This is immunotherapy, not traditional chemo which patients with many other types of cancer undergo. It is very do-able
(I had high grade and so I had BCG treatments.) But you are a very long way from even needing to think about this possibility.
Right now you need to step back and follow the recommendations of your urologist. The cystoscopic exams are not fun, but not bad either. They are well worth the peace of mind of knowing that the cancer is NOT there. You are allowed to feel sorry for yourself and go outside where no one will be bothered and SCREAM. This is not what you wanted, but you are in good hands and have a really good shot at beating this.
And any time you want to let off steam, or ask questions, or just find someone to lean on we are here for you. We have all been where you are today and WE DO UNDERSTAND how you feel.
Wishing you all the best
Sara Anne
