Hello Everyone

[bc403]

Hi everyone, this is my first post…I was diagnosed in June 2012 and had a tumor removed. I’ve had 9 bcgs and 1 cysto since, and am part of the program now. It was a total shock, I am 38 and healthy and a non-smoker, but I guess it is just a bad luck case. Anyway, I have my head wrapped around things now and do feel much better – I wasn’t feeling very good at all before they removed the tumor.

Since my cysto and subsequent bcgs I have been experiencing a lot of UTI and even incontenence issues. I am wondering if anyone has any advice on these, as it can be really annoying. I am on cipro, but can’t seem to kick the infection and know it will continue once I go back to the hospital for further treatments.

Also, I wanted to ask about cysto timing. I had mine Dec 20th, and I thought it was every 3 months for the first year. I am going on vacation in late-March so called to be proactive and they booked me for late Feb. I found this odd as it was just like calling to get a regular dr appt. Anyway, I am going to call back and figure it all out but thought I would ask here too.

Thanks everyone, and I appreciate any advice and thoughts…

[marysue]

Hi bc403! I’m from Calgary and have done 2 TURBTS and 21 BCG’s. The general rule for cysto timing is every three months for 2 years, if clear then move to every 6 months for two years and if still clear annually after that. If you are doing BCG it is best to time a followup cysto 4-6 weeks after your last treatment to give your bladder time to be clear of any inflammation from the BCG. If the lining of the bladder is inflamed it can be difficult for the doc to distinguish whether it is just inflammation or cancer returning. As for bladder infections it is my understanding that you shouldn’t have BCG if you have an infection. If you are on antibiotics the drugs kill the BCG since it is a bacteria and that renders the treatment useless. A lot of us have found cranberry juice and cranberry supplements good for helping with infections. Also remember to drink tons of water when having BCG treatments.

[KIOWA]

Thanks for joining us. I’m glad you are being proactive, that is definitely necessary. I think you should clarify your appointment time with your doc. Typically, although it varies, cystos are every 3 months for at least a year then every 6 months for at least a year, preferably at least 2 years and then annually if nothing recurs. And yes, you really do need to get checked annually for the rest of your life. Mine occurred at age 42, I went about 18 years free and thankfully my doc in insisted on annual cystos forever because there was a recurrence. But that schedule depends on how well you are doing and certainly if you are getting BCG. Cystos should be done 4-6 weeks after the last BCG infusion. It may be a little early for a cysto. Talk to your doc about it and this will get resolved. Living with BC is exactly that: living with it. But it is doable and the closer the follow up the better. It is important to get your pathology report and discuss it with your doc so that you can be clear as to the stage and grade of the cancer. As for the infections, these are common and Cipro is a wide spectrum anti-biotic that works well, but not for all people. My urologist has me take Cipro for a couple of days before each cysto and for a couple of days after each one to help ensure that no infection sets in. talk to your doc about the infection also. I went through a chronic bladder and UTi infection for almost 3 years once I never ever want to go through that again. It took a while before they could isolate the bacterium. But that was well before Cipro and the new sulfur drugs were available. Good luck and please keep us informed.

Kiowa

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