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Good morning, my name is Allan in Victoria. In 2009 I was diagnosed with T1 high grade BC, back then there was no commercials with the red lemon etc. ,never even heard of bladder cancer but started seeing my Uro after alot of blood in my urine, turns out I had 3 big honking tumours. I had turbs to remove followed by 6 treatments of BCG and it seemed to do the trick…. 5 years later looky looky a small califlower in the old blad, turned out to be low grade. It was removed and for the first time the Uro put a dose of Mitomycin in which caused my bladder to swell like a football. A few weeks later I had a BCG 3 week booster which I thought that the combo of the two had a reaction and it took forever for the swelling and burning to subside with lots of pain. Eventually it diminished but every cysto showed some kind of redness and inflamation for a lengthy stretch but BC free so suck it up buttercup right? Last July during cysto , my uro was concirned about a velvety patch which a biopsy was done and it turned out to be (I think ) TIS carcinoma cells. Again Mitomycin was used and again I swelled up and so far 8 weeks later i’m still having blood and tissue and alot of burning and pain, which now i attribute a reaction to the MC not BCG . I guess what I want to know is has anyone else reacted to this stuff? I can’t start BCG till the bleeding stops, everything i’ve read says allergic reaction but Its hard to wade through all the “web” diagnosis. Also URO is aware but just wondering if anyone has been through this, Thanks
Hi Allan
I had only 1 instillation of MMC in 2007, made me very nauseous but no other side effects. Sorry you are having difficulty after your last Turbt and MMC instillation. I have spoken to many patients taking several weeks to recover from the Turbt with bleeding, but can not recall anyone that had swelling from the MMC instillation. Wish I could be of more help regarding your situation.
Hopefully the bleeding and pain subsides in the very near future so you can continue with BCG maintenance treatments.
Wishing you all the best going forward.
Jack
Cancer free since 2007
BCG =Bladder Cancer Gone
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