I had my follow up appointment today. The NP was helpful in answering questions about what level of activity I could expect to engage in right now.
However, and this is a big however, she was of no help in discussing the further treatment plan. I don't think she had even read my pathology report.
What grade was my tumor? "Oh, numbers don't really matter. We all get hung up on the numbers. They're not that important. It wasn't invasive and that's all that matters."
Can I get a copy of my pathology report? You would have thought I'd asked her to come to my house and wash the windows.
Can I get a second opinion on my slides? You would have thought I'd asked her to come to my house and wash the windows AND wax the floors. "Oh, those samples may not even be alive anymore, so it might be too late. You should have thought about that before you had your surgery."
How much time between the second TURBT and BCG? "Oh, we'll want to start that right away. They'll get that mytomycin in there right away." No, not mytomycin, BCG! "Oh, they'll start that right away."
Scheduling surgery number 2? Well, I'll talk to the surgery coordinator, who will get back to you, but it may take awhile because there may be other important things ahead of you.
Well, after several deep breaths, we did get a call from the very helpful schedule coordinator, who lined up my next TURBT and found the right person for me to talk to about the time between TURBT and BCG ("enough time for your bladder to heal ... probably 4-5 weeks"). Another person called me to give me informtion about contacting the hospital to have the slides sent for 2nd opinion, and to let me know that I could pick up the copy of my pathology report.
I think after the next TURBT, I will demand that my appointment be with the doctor.