Major complications from Mitomycin C leakage

17 years 10 months ago #504 by gerri
Oh my god. The exact same thing just happened to my wife (4/11) but the docs keep insisting mitomycin-C is benign!!! Would be a tremendous help if you can tell me the name of the hospital/doc so that mine can get in touch and maybe they can start to figure out what's going wrong and how to treat the complications. Hope your dad has found some relief. Thanks, gerri

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18 years 2 weeks ago #360 by wendy
Hi,
I'm so sorry to hear about your father's complications, you're right that it's a rare occurence-thankfully. Instilling Mitomycin or any drug in the bladder when there's a cut, tear or perforation is extremely dangerous and even life-threatening. But the fact that it happened is not necessarily a case of malpractice, this can occur even with the best experts. Someone of your father's age often has thinning of the bladder and it can be very tricky.

The recovery period is important, I"m glad he's hospitalized and being cared for. I'm a bit confused as to why the doctor would remove most of his bladder instead of all of it...It almost seems as if it would have been simpler to complete the bladder removal, but perhaps that wasn't possible, wasn't indicated or would have made things even more difficult for your father. I just hope that his bladder capacity is large enough that he can be comfortable.

In any case this is a very sad example of what can go wrong. Yes, it's very unusual, most doctors will have no experience with a situation like this, it's good he's at a top-notch institution. If anyone knows how to treat it, that's the place.

The fact that he has survived it is a good sign that he'll recover from here on. I hope there's not too much damage to the surrounding organs and that he gets well soon.

Wendy

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18 years 2 weeks ago #358 by soccermom
:'(
My Dad, who is soon to be 80, recently suffered severe complications following TURBT and intravesicular Mitomycin C.
During or very soon after the TURBT, his bladder perforated and the MMC leaked out into his body, destroying the bladder and damaging adjacent organs. He suffered extreme pain and finally underwent surgery, resulting in removal of most of his bladder. He was only expecting to have the perforation in his bladder sewn up when he went to sleep..instead when he woke up, he was shocked to find he had lost most of his bladder. He is still in the hospital, with a catheter and being fed intravenously,
I am so angry about this. I've searched the literature and found this is a rare, but very real complication. The TURBT was performed at a prestigious major cancer center. This was the last thing anyone expected to happen.
I wasn't sure if I should post here or under the superficial thread...that is what he started with, but now he is more in the cystectomy category.
He could have died from this, and it isn't over yet.
I'm torn between thinking about malpractice and just trying to help him pick up the pieces.
He is very depressed and really suffering.
What can I do to help him? I don't live near where he is hospitalized, but I did spend part of last week with him. His wife is with him, but they are elderly and a lot of this is beyond their comprehension.

Any help appreciated.

Thank you.

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