We saw the uro yesterday & asked straight up - how bad is this? He said - Yes, its bad. He also said the recent biopsy, Dec `13, showed the same situation as Sept. `13. I said, No, it is different. The earlier one confirmed CIS only. The recent one, T1 tumour removed. He then apologized in quite a flippant manner. He then appeared to be quite unsure how to begin talking to us. Then he offered 2 options - cystectomy or 6wks BCG. He gave no detail about the first option but explained a lot of the BCG protocol. We assumed he was trying to encourage Greg to choose the latter. He left the room & on his return Greg asked him in his opinion, knowing Gregs history, what should he do. He said - have the bladder taken out. This all seemed to give mixed messages, amonsgt other things he said. That they do quite a few removals, that the guy who does them at our public hospital only does the bag technique, not the neobladder. If ppl want that, they go to Auckland & pay.
He was also very flippant when referring to cystectomy, like - yep, we`ll just whip it out. He then went on to say that it is the `cure`, but then conceded that yes, cancer can come back. This man is not the one who did the TURBT in Dec. He also admitted that they, the uro team, had been a bit remiss, been understaging him & been a bit behind the 8-ball, regarding Gregs condition. His words. Greg also told him he was feeling like he`s been mucked around a bit. We are just starting to realize that he was first diagnosed with CIS in April last year, where he was prescribed antibiotics & a TURBT in Dec. Talk of BCG but nothing happens.
Greg has decided he would like to give BCG at least one go before having to make the big decision, but he is a bit scared that the delay might mean it goes deep. I`m thinking if they removed all the T1 in Dec, he must be back to just the CIS at this stage - how quickly does the T1 come back?
we have now informed the uro that he wants the BCG & to start asap. We have yet to hear anything. But that was only yesterday.
Greg would love to talk to someone who has had bladder removed as we know no-one else. He does know they take out prostate etc so he`s thinking, there goes the sex life etc, which is a bit gutting - hes not even 60!
Unfortunately, we had planned to go on holiday for 3 wks, & had some people from Canada coming to housesit for us. They arrive Feb 1. We are happy to cancel holiday plans if it means Gregs gets his treatment, but not keen to tell these nice folks they can still come & stay but we will be here too!
Thanks for reading
Maree