Dear Aktommy,
I'm sorry but glad you found the forum. It has been a great source of information for my family.
My 51 year old husband is somewhat of a newbie and had his first TURBT 03-11-15 with an initial diagnosis of non-invasive high grade cancer (urothelial carcinoma in situ). Following standard guidelines, he had a repeat TURBT on 4-22-15 with the same result. About six weeks later, on 06-02-15, he received his first of six weekly instillations of BCG.
The best initial feedback from the forum was to work with a bladder cancer specialist who sees and treats many bladder cancer patients. We switched from a local urologist in our rural county to a specialist two hours away at Johns Hopkins University. That decision provided immediate relief in having confidence in receiving excellent care and treatment.
Waiting for the first pathology report was nerve wracking. The report was actually available online through a patient portal on a Friday. I read it and interpreted it wrongly and fretted through the weekend before getting the phone call early the next week. My husband wasn't aware the report was available and had already commented he would know soon enough when the doctor made the call. If you have similar access to results, try not to jump to conclusions.
As for the TURBT experience, for the first TURBT, my husband was sent home with a catheter. In reading other posts, it seems to vary on whether a Foley catheter remains in place after the TURBT. For the repeat TURBT, the catheter was removed in the recovery room. The catheter at home for three days after the first TURBT was very uncomfortable for my husband. He was very diligent in staying well hydrated and as a result was filling the cath bag easily. The discharge instructions for the cath bag referred to emptying it directly in the toilet. In the recovery room, the nurse emptied the cath bag first into a urinal container. I used that method at home frequently and especially at night. My husband appreciated not having to move from bed as often. Removal of the cath was done at home following some Youtube instructions and also since our doctor said this was something we could do rather than make a two hour one way trip to him. And it was easy to do.
Once it was easier to move around without the catheter, my husband started to resume normal activities and attempted to return to work (in an office) three days after the first TURBT. He has a lengthy commute and was not drinking as much in the day to try and avoid a stop on the ride to and from work. He experienced some bladder pain as a result. Stay hydrated! Fatigue lingered for a while for my husband. While I don't know the size, his tumor was large, and I wonder if the extent of the resection was a factor in his recovery time. To manage the fatigue, my husband stayed with friends near work during the week, worked reduced hours and came home on the weekend.
Recovery from the repeat TURBT was much easier and required less care taking. My husband (of 23 years, partner for 29) jokes about the lack of attention now. I am sorry for your wife's recent loss and am glad she is there with you on this journey. This forum is for care givers as well.
Best wishes on your TURBT!
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