I am also sorry about your reaction to mitomycin, I had it instilled in me four weeks ago after my TURBT, and I too have developed cystitis as a result, but despite that, it is standard protocol for cancer surgery in the bladder and I am glad the urologist did it to protect against residual cancer cells. I would do it again even with the post-operative discomfort. Some people do have very adverse reactions; that is true with any drug. But if a drug creates a very adverse reaction in some people, does that mean the drug should be unavailable to everyone? By all means make the regulators aware of the problems you have suffered, but you will find many people (including me) who do not agree a ban on this drug, the medical research is very clear that it saves lives.
T1 high grade transcell diagnosed 8/14/2015
TURBT 8/21/2015, removed tumor (17mmX14mmX11mm)
Repeat TURBT performed 9/25/2015
Pathology Report: no residual cancer detected
BCG planned starting in October
I have recently been diagnosed with hemoraghic interstitial cystitis, and I only had one treatment right after TURBT in 9/2012. This was done to me without my consent, and while I was under anesthesia. I did sign the consent and disclosure form, but only with the TURBT procedure. The instillation of the mitomycin c was written in after I had signed the form, and was approved by a different urologist other than my own. The statute of limitations had expired for malpractice, so I have taken it as far as I can by reporting it to the FDA, and also to the drug manufacturer ACCORD HEALTHCARE. THIS DRUG IS BEING PRESCRIBED OFF LABEL BY UROLOGIST. I just found out today, and it was ACCORD HEALTHCARE that told me this. I am also filing a complaint against the doctor who approved this with the Texas State Board of Medical Examiners. I urge everybody who has had any adverse reaction to also file a complaint with the FDA and also the Drug Manufacturer. I now have chronic pain, and urinate all the time, and I have to get up 2 to 3 times a night. I am now In pain management. I am also allergic to Elmiron, which is the only drug that has been approved by the FDA, and there was no guarantee that it would have worked. They just established the protocol for this disease in 2011. So please, file a complaint so the Department of Justice can intervene on our behalf, and stop the off label use of Mitomycin C for early stages of bladder cancer. Its criminal what they are doing for the sake of money. ADRIANA