Women and Bladder Cancer: Sharing Stories to Advance Research

In March of 2019, BCAN was invited to share the experiences of women diagnosed with bladder cancer at the “Bladder Cancer in Women: Identifying Research Needs to Improve Diagnosis and Treatment” program sponsored by Johns Hopkins Greenberg Bladder Cancer Institute and the American Urological Association Translational Research Collaboration.  The transcript below presents the stories of four women, a true testimony to the notion that while bladder cancer is “more common in men” according to Dr. John Gore, and it is “more lethal in women.”

Each of these women’s stories are memorable and unique. However their stories are repeated often around the country because women are not the “typical bladder cancer patient.”

Karen

Karen’s story: My story started 11 years ago when I was 51. I started to have frequent urinary tract infections about four to five times a year. They were very severe; I had a lot of pain with them and a lot of bleeding isolated to the UTI. Then after about a year of being treated by my primary care provider, she sent me to a local urologist. He started me on low dose antibiotics and cranberry supplements. I repeatedly kept saying to him that something just isn’t right when I urinate. It just feels like something is falling out at the end of my stream. He kept asking “Do you have any blood?” I said no, I don’t have any blood when I’m urinating.” Read more about Karen’s bladder cancer experience here.

Camille

Camille’s Story:   I came to this meeting to start taking care of myself.  I realized that now that I’ve pushed all the way through the past three and a half years with bladder cancer, I am now at a point where I can help other people.   I was diagnosed in January 2015.  It was one serious year, one of the biggest for our family, there was a lot going on. I had knee surgery in May. I started a new job in July and had my first son was leaving for college. I was tired and wasn’t rehabbing my knee well at all. My physical therapist was upset with me.  He didn’t understand why I wasn’t trying. I didn’t understand why I wasn’t trying.  I just didn’t care and felt crappy.

Anne

Anne:   I was in the military between the reserves and active duty, for 40 years. I retired as a Lieutenant Colonel.  I was assigned to tours in Iraq, Afghanistan, and in Bosnia.  I felt like I always had a UTI even my last tour in Afghanistan. Even though I had blood in my urine the entire time I was in Afghanistan, I never had a cystoscopy. I was given antibiotics for a UTI. When my mother passed away, everybody in my family said I didn’t look good. I came back home from the funeral and immediately went to urgent care. They gave me more antibiotics. It was not getting better and I was seeing red in the toilet bowl, blood clots, you name it.

Lee

Lee’s Story:  I will be 74 next month and looking so forward to it. I usually start celebrating my birthday on the first of April and finish on the 11th of May. Oh boy, I had a whirlwind experience as a bladder cancer patient. I went to my primary care physician after I’d come back from an extensive Caribbean vacation. I put whatever was going on with this little bit of blood I was seeing, until I got back from that special trip. While I was on vacation, the urgency and frequency to urinate was unbearable. I could barely get through a massage. Read more of Lee’s story here.

A special thank you to these amazing women for sharing their stories.

Panel Question & Answer

BCAN asked the panel 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.

Did your doctors talk to you about the potential impact on your sexuality with the treatments that were given to you are offered to you? Read their answers here.

What other benefits did you get from the care that you received? Read their answers here.

What things did you feel were a benefit to your survivorship? Read their answers here.

For more bladder cancer stories, or to share your story as a patient or caregiver visit My Bladder Cancer Stories.