Why I said no to bladder removal, and how I made peace with that choice
Someone in a bladder cancer group asked a question I know well. Did anyone decide to keep their bladder and just do treatments? I have lived that choice, so I want to share how I got here.
After about my sixth recurrence, my doctor recommended removing my bladder. The medical name for that is a radical cystectomy. It is a major surgery, and for a lot of people it is the right call. I understood why it was on the table. My body kept growing tumors, and my cancer had moved from low grade to high grade.
I told my doctor no. I said I would do whatever I needed to do to keep my bladder. Thank you very much.
That choice came with a lot of treatment. I could not use BCG, the most common option, because I was treated for TB years ago and BCG contains live TB bacteria. So I did chemo with a drug called Gemcitabine. I have had more scopes and tumor removals than I can count. I show up for every check, because that is the trade I made when I chose to keep my bladder. I am at ten recurrences now. And I still have my little bladder.
My reasons were personal and practical. I am an overweight woman and used to have a B-shaped belly with an apron fold sitting right where a stoma would go. I was advised to get a panniculectomy, like a tummy tuck but without muscle repair. With my other health issues, I knew that road would mean a lifetime of leaks, rashes and infections. The supply cost weighed on me too. I already stretch to cover my monthly medication and supplements, and some months I cannot cover it all. I could not picture affording a lifetime of supplies for a urostomy or an Indiana pouch on top of that.
I did end up getting the panniculectomy, and it turned into a terrible surgery that left me with even more painful issues. I went through with it just in case I ever changed my mind, lost the weight, or got better care for my other health issues.
Bigger than all of it, I chose quality of life over quantity of life. I am 52 now, in the last quarter of my life, and I live with daily pain from my other conditions. Adding a major surgery and a lifetime of managing a stoma felt like more than I could carry. I know myself, and I knew what that road would do to my mind and not only my body. I made this decision with a clear head and peace in my heart, and I have not regretted it.
That peace is what sent me out on my travel and concert bucket list. I would rather spend my money and my time on experiences with the people I love than on things. Quality time with my family and my closest friends is what I want now. I have no room left for drama. I want to live with my bladder fully intact at all cost.
Here is what I hope you take from my story. You do not have to blindly follow your doctor’s recommendation. Get a second opinion. Learn about your disease and get comfortable with the common terms, so you can ask good questions and understand the answers you get. Find support. Get involved with the national organization for your cancer type, because those groups often know about the newest testing and treatments coming down the pipeline, and they can point you toward clinical trials. Most doctors care deeply, they just do not have the time to hand every patient the resources they need. So let them focus on your care, and take the research into your own hands where you can.
Under all of it, I hold onto hope. New treatments and better testing are coming for non-muscle invasive bladder cancer, and options that did not exist when I was diagnosed eight years ago are here now. I believe medical science will keep making advancements that save lives and make them better. That belief keeps me going, and I will fight for my little bladder for as long as I can.