Yesterday met with Dr. Gilbert to review my path results, and to review next steps for treatment. He agreed with my urologist and John Hopkins. First tumor was T1 low grade with 5% high grade cells second one TA low grade. Since BCG did not work we could begin mitomycin, or as my doctor suggested to just wait for next cysto in Feb. If at that time there was another tumor to move forward with mitomycin. He also suggested since I have not had a CT scan that I might want to consider that since it shows more than the retrograde pylelogram. He did state that the right sided calyectasis should be watched,
He stated as well as what my urologist has stated that this very rarely becomes invasive. The question I did forget to ask is why then would you need to remove them if they return every three months, why not just once a year, if there is no chance of progression.
Happy that I did go to NCI facility, but even happier that they were in agreement with my urologist. I waited three hours to see the doctor, they didn't have my records I faxed over, good thing I had them with me. The doctor had not reviewed them before the appointment, which was not what I would have expected in a consultation.
