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Recently Diagnosed and Frustrated!

3 years 2 months ago #51304 by PaulaMM
Hi Everyone,

I was recently diagnosed with Papillary Urothelial cell carcinoma, low grade. It was kind of a fluke that they found it. I was also diagnosed with a enterovesical fistula. When they did the in office cystosocpy to see if they could visualize the fistula the Dr told me the could see the fistula and wanted to do a biopsy in the hospital. I agreed and went in thinking nothing of it. I went to my appointment following the in hospital cycstoscopy/biopsy planning to be told nothing new.. I had my 15 yr old daughter with me. The Dr came in and said "well it's cancer". When I started asking specifics he said bladder cancer. I began asking about exact type and staging and he said that it would all be done with another procedure (TURBT) and that the office would be calling me to schedule it. As I had an appointment only hours away with the colorectal surgeon to discuss the fistula I wanted a copy of the surgical report and pathology information to take with me. Once I got home and started reading it stated I have a 15CM (yes, CM) tumor in the dome of my bladder along with the fistula.

I was called the next day and the TURBT is scheduled for the 15th of this month. In the mean time my Dr has given me very little information about it and never mentioned that I had a tumor let alone the size of it. I am feeling very frustated by this!! Not only that.. how on gods green earth are they going to get a 15CM tumor out with a cystoscopy? I plan on calling the office with more questions, but I know he is out of the office this week.

To make matters more frustrating the surgery to repair my fistula (bowel resection) will have to be put off until after all of the cancer is figured out and that will not be until the 23rd of June.. and my colorectal surgeon goes on vacation that day and does not return until July 5th.. almost a month away. *sighs*

At this point I'm feeling pretty left in the dark about things with the urologist and plan to discuss that with him. I do have a bit of a medical background and do not like the way things have been handled. Any thoughts or suggestions would be greatly appreciated!

Paula

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