Improving Care for Women with Bladder Cancer

BCAN asked a panel of women diagnosed with bladder cancer to share the parts of their experiences during their diagnosis process they felt went well and provide input on the things their doctors might have done better for them as women with bladder cancer.

Lee:   I was just happy that I was fast tracked. That’s the best thing I can say. The doctors did not dally. They pushed me right through. I’m so glad that I made the decision to listen to my doctors and do what I did. I feel so healthy sometimes until it scares me. Before my bladder cancer, I used to weigh 250 pounds. I lost the weight on my own because I was determined to be healthy. My primary care physician thought I was the healthiest patient she had, until I contracted cancer. She still goes over my notes to see where she said she went wrong. But she didn’t go wrong. She did exactly what she was supposed to do by referring me and why I’m the one sitting here now. I am grateful I am that they did fast track me the way they did.

Camille: As a parent, a female and a wife, whether you’re working in or outside the home, there’s a perceived need to make sure that you are taking care of everybody and you’re handling everything. As my kids got older with sports in school and college, their dreams and hopes were important. I was wrapped up in that. I wish I would have challenged my gynecologist, said to her, I really think something is wrong. I remember my husband saying, well, did the doctor call you and talk to you about it? When the nurse called she said everything was fine. This just must be menopause.

My husband was supportive. But I did not feel I could go to a Harvard trained gynecologist, and say “I think you’re wrong.” I had just started a brand-new job. Like most women, I was just powering through all this. Women just need to stop and make sure that we’re really listening to our bodies. I regret not pushing back on that point, and not looking at my lab reports.  I did get my lab reports after everything happened. I look back and there were traces of blood in my urine. So why was there no blood visible in my urine? Then you realize, it doesn’t really matter because I’m here now.

But I just wish I would have either gotten a second opinion or I wish I just would have done a better job at taking care of myself. Listen to your body and then communicate what your body is telling you. I thought I was doing that, but apparently, I wasn’t. I just kept saying something is not right.

Would anything have changed if I had gotten it figured it out two months earlier? Probably not. But things would have just been put in motion quicker. But I was really lucky too and grateful that I had amazing doctors who explained what I needed to do. I trusted them and I’ll trust them all again. The vesicovaginal fistula was a drag, but stuff happens. I was very lucky to just have people say, this is what you need to do, you don’t mess around with this. I am glad that I didn’t because there are people that had a lesser stage bladder cancer than mine and they’re gone. They’re people that I met in the beginning and they’re not here anymore, and that’s hard.