I was diagnosed with stage 2 grade 3 muscle invasive BC in December, 2008. I had one TURB and asked the forum foks for help. Since then, I had an appointment with Dr Konety at UCSF. He did a cysto and ordered more testing. THe test results indicated 1 cm of tumor left inside. This is from PET/CT Urine Cytology and FISH. I scheduled a re-TURB with him for March 30. After many phone calls, my insurance will pay. He recommends cystectomy (because I have CIS) and right now I am still torn between cystectomy and bladder preservation, My hometown uro wants me to do the chemo radiation and has referred me to an oncologist who I haven't met yet. The local tumor board also recommended this for me. I told this to Dr Konety who said I could do it if I wanted to, but there are side effects that would influence the cystectomy if there is radiation damage. My uro has not realy discussed side affects and I haven't seen the oncologist yet, so I still am undecided.
According to the PET/CT,my cancer has not spread outside the bladder. I am so grateful to have Dr Konety and thank all who referred me to him. I hope to discuss cystectomy with him again following my 3/30 TURBT. I am still looking for any info on the success of bladder preservation and also side effects of chemo prior to cystectomy if I choose that. I think I will need some chemo to deal with micrometestasis for whatever I choose. I am 52 years old and work part time and also live alone which is affecting my decision. I am terrified of getting chemo/radiation and may need some help deaing with this fear. Thank you to all who are helping me with this stuff.
I go to San Francisco this Thurs. for my pre-op work.
