Skip to Accessibility Tools Skip to Content Skip to Footer

The Next Steps

It is amazing that my High Grade T1/CIS diagnosis for bladder cancer was just over 3.5 years ago. After the initial TURBT and then another 6 months later, I continued BCG to the count of 18 total. The last one was brutal on my system, but I was focused on bladder preservation. The doctor decided that 3 years in and following BCG protocol we would give my bladder a reprieve. He continued to do the 3 month cystoscopes. The first one revealed NED, all clear so schedule the next one and move on. As some know, continued NED is so wonderful, but there is always the lingering notion that it can come back.

My test results

At the next cysto, the cytology came back “a-typical and suspicious”, first one in over 3 years. Unfortunately the lab failed to do FISH. So, we did another cysto for the FISH. It came back positive. Therefore another TURBT was scheduled in May, a frozen section during surgery showed “negative”, but after further pathology, the CIS was back.

Battle to keep my bladder

Now, the next steps. It seems that BCG is not going to work for me so we are looking at Gemcitabine. I go next week for that scheduling. Not sure what to expect, it seems that for some, it has worked in the continuing battle to keep the bladder. I know what to expect with BCG (the after effects, etc.) Just cannot find a lot on Gemcitabine on other sites as to side effects. So, I am preparing for the next steps.

My plan to fight

The journey continues and I realize every story and experience is different, but we all have a story and a hope. Bladder cancer is tough and it takes toughness to keep fighting. That is what I am working to do. Fight!


What is your story?

Share Your Story

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.


  • Brandy78
    1 year ago

    I’m where you were 3.5 years ago now. Bcg maintenance. Good luck with your new treatment plan. I have never heard of this,and I’m trying to learn all I can about keeping my bladder. Thanks for sharing!!

  • Poll