I returned to my Uro on 8 June for the results of the biopsies I had taken in mid May and I have to say the pathology report and the Uro interpretation has confused me even further. They both say the pathology is inconclusive and I have to have more biopsies taken under GA in about 6 weeks then more pathology. So the wait continues but I have learned you have to be patient with this beast. I had thought about getting a second opinion at this stage but I do have a good rapport and I trust my current Uro in whom I have the utmost faith. The following are some excerpts from my latest pathology for anyone interested.
I don’t know what these might be saying apart from the obvious (inconclusive)

Clinical History
High grade TCC and CIS (UPO5-2790 TCC Grade III & UP06-509 TCC Grade III with CIS). Post BCG Biopsies

Macroscopy
Sections of specimen (a) confirm 2 fragments of bladder mucosa in which the lining epithelium is mildly atypical. Deeper levels through the tissue fragment confirm focal areas where the epithelium is thickened and where there is nuclear enlargement and disorganisation. Immunostains were performed for cytokeratin 20 which confirms focal staining within the epithelium. The epithelium staining, in most areas, is superficial but in some areas basal staining is also noted.

Sections of specimen (b) confirm 4 fragments of tissue in which the lining epithelium is inflamed and ulcerated. However, in one tissue fragment the epithelium is thickened and shows full thickness atypia. Immunostains for cytokeratin 20 confirms staining in all 4 fragments but in most areas the staining is superficial. In one fragment, however, there is full thickness staining which correlates to the same area identified macroscopically as full thickness atypia.

Comment
Full thickness staining with cytokeratin 20 is an ominous feature and generally correlates well with carcinoma in-situ. In this specimen the morphology is significantly complicated by marked inflammation and mucosal ulceration. Further, in areas where there is full thickness dysplasia and significant atypia fail to stain completely with CK 20. In other areas the atypia is less marked but in these areas full thickness staining is observed. My interpretation is that these changes are consistent with carcinoma in-situ although admittedly this diagnosis is difficult to reach due to the presence of extensive inflammation and mucosal regeneration.

Conclusion
Specimen (a) bladder – low-grade dysplasia

Specimen (b) Lt. trigone – high grade dysplasia equivalent to carcinoma in-situ. Marked inflammatory changes are also present in this specimen which does significantly complicate histologic diagnosis.

-end of pathology report-

My Uro says more biopsies in 6 weeks and if these show a recurrence for sure then perhaps we will consider a further round of BCG. These results have certainly raised my level of anxiety and I will have to wait nervously until late July before any further news can be delivered (hopefully all good).

I will update later but thanks for reading my story.