Dear Ian,
If this is your path report? It couldn't be better! Congratulations, I'm very happy to read there is no CIS and you're still stage Ta, Grade 1. And getting referred to the best in the area with all the trimmings (O'Brien at Guys London) is the icing on the cake..
About the mitomycin. Hmm. Two things: The guidelines all say that low risk tumors like yours don't need a 'course', but maybe a one-shot post TUR setting is offered. Riskier tumors are considered for an extended course of Mito, usually 6 rounds, sometimes more or with maintenance.
For the one-shot Mito (or other chemo drug) deal, which is the lastest guidelines from the EUA and AUA, the drug must be instilled with 24 hours, and preferably within 6 hours.
But...TaG1 tumors do not necessarily need or benefit from this approach, is the risk vs. benefit worth it? Not all experts agree. It's not a cure, but only a temporary solution to delay recurs up to one or two years. So, you might even skip it and still be within normal treatment standards with your single, (small?)TaG1 tumor and no CIS.
Over 3 or 4 cm is considered a higher risk tumor and more reason to get that one mitomycin instillation. But not necessarily, everything is negotiable. Let your doctor convince you, don't take my word for it, please.
Your last statement, 'i will also be having a course of mitomycin c
they have asked me to consider whether i would prefer myto first and then blue light or vice-versa have until Tuesday to decide"
Although I don't know how long you must wait for that appointment with the expert, my guts say....WAIT! See Dr. O'Brien, talk to him about your pathology report and whatever else, and get your blue light cysto first. Treatments like instravesical chemo or BCG can cause side effects that resemble inflammation and even CIS, you don't want false positives getting in the way of the best innovation to come down the pike in years- By that I mean the blue light cysto, Hexvix. (for those who are interested:
blcwebcafe.org/hexvis.asp
, it is not widely available in the US yet, but approved in Europe for a while now).
So...do you know for sure if you will get another cysto with Dr. O'Brien, and how soon after your TUR will that be? Maybe your first visit is a consultation only, good chance.
Sorry you are in pain, I hope the urine culture shows a simple and treatable infection, or that the pain just disappears on its own as you heal.
Take care and thanks for the update. I'm thinking about you- just across the English channel from me.
Wendy
PS the weather is gross, eh?