Thanks to all who responded to my prior posts. This dis-ease can certainly be a roller coaster! Here is an update on my ride thus far…
The pathology report from my initial TURBT indicated “high-grade, poorly differentiated urothelial cell carcinoma of the bladder which invades both the lamina propria and musculari”, thus muscle-invasive bladder cancer. CT and bone scans were negative for metastasis. I was referred to the nearest cancer center (Dartmouth Hitchcock) for evaluation/treatment. A Dartmouth pathologist reviewed the initial pathology report and concluded that “although muscularis propria invasion cannot be definitively identified by H/E stains, the growth pattern is worrisome”. The Dartmouth URO explained options and it was decided to conduct another “re-staging” TURBT.
The second TURBT at Dartmouth included resection of the original tumor site, removal of a 1 cm papillary tumor, and additional samples from different quadrants. Pathology report indicated high-grade but no muscle invasion, with CIS. At the tumor board meeting, pathologists recommended looking more closely at the initial pathology report/original TURBT samples/slides which had indicated muscle invasion. This was done and they concluded no muscle invasion. Quite a lesson on the importance/accuracy of the initial pathology report...
Based on the diagnosis of high-grade non-muscle invasive bladder cancer, the Dartmouth URO recommends BCG treatment. However, neither Dartmouth or my local hospital can get BCG so they are recommending the six-week Mitomycin C treatment which I am starting next week at my local hospital.
Recurrence seems fairly likely based on my research on Mitomycin and high-grade/CIS, but I guess this is the standard approach?
Any input on what to expect with the Mitomycin treatments? I’ve yet to have a cytoscopy or catheter installed (without being under general anesthesia) so I’m a bit queasy about this but will have to get over it quickly I guess.
I have found out that no matter how much research one does, or how much information you get from your providers, the actual experience of a procedure/treatment can be quite different. Certainly there is a wide “your mileage may vary” experience for each individual, but it is so helpful to hear the experiences of others on this forum. I may write up my varied experiences with having TURBTs at different facilities (local vs. large hospital), to help folks who are facing their initial TURBT.
Happy Thanksgiving to All!
-Jeff