Five-Time Survivor Reflects on Bladder Cancer: ‘There’s Always Hope’

Fran Curtis is a five-time survivor of cancers survivor including breast, appendix and skin cancer, but she told CURE in a recent interview that of all of her cancer journeys, receiving a diagnosis of bladder cancer in 2016 was the toughest.

“That one was a tough one that hit me harder, I think, because I was afraid I was going to lose my bladder or my life,” said Curtis, now a patient advocate for BCAN, the Bladder Cancer Advocacy Network. “I didn't know when I was first diagnosed how bad it was, whether it had spread beyond the muscle.”

Curtis sat down for an interview with CURE to discuss her bladder cancer journey, from her initial symptoms to her treatment experience.

Many women are unaware that bladder cancer can affect them. Can you describe the symptoms that you experienced?

I didn't have the typical scary blood in the urine; that would have had me go [get checked out] sooner had I had blood in my urine. For me, instead, it was just mild urinary changes that started when I was getting up to go the bathroom at night, when I wasn't usually. Driving into New York with my daughter, we used to be able to grab a big coffee and go. I live in New Jersey, so it would be maybe a two-hour drive, and suddenly, I'm having her stop at every rest area along the way. She said, “Ma, you need to get this checked.”

But actually, I didn't. I had friends that are my age or a little older that laughed and said, “Hi, join the club. You're getting older.” It's almost like it should be normal aging, but it really isn't, which I later found out.

[There was this] urgency, frequency, and then it was getting even more urgent. That's when I realized it was starting to affect things, like if I went to a restaurant, I'd be getting up from the table to use the restroom four times during a simple meal. I would stress to women, if you have any urinary changes, to get it checked. It's hopefully nothing, but if it is something, you want to know that early so that it can be treatable.

How did your care team and your family support you through the bladder cancer journey, and what advice would you give to others on building a strong support system during their own treatment process?

I was pretty devastated in the early part, because I didn't know how advanced it was. I think my family was very frightened, but I will tell you, they really helped by giving me positive reinforcement. My husband was big on [saying], “They're doing so much in research. You're going to be fine. They're going to have a treatment for you.” My daughter [is] a nurse, and at first she wanted me to get my bladder out right away so I wouldn't have to worry about it in the future. But she also supported me when I said I didn't want to do that right away. She was very good. I used to send her some of my pathology reports, because of her medical knowledge. My son — he's the fun one — and would make me laugh and go with me on treatments.

My advice for caregivers is to just be there and [for caregivers to] try to continue your normal routines, so that it's not disruptive of the family life and what you normally do. I still work, so I had good support with coworkers and my good friends.

What was your bladder cancer treatment journey like?

Initially, because I was still on my employer's insurance, I had no choice, as far as I couldn't go into New York [for treatment] or anything. I just went to a local urologist. He put me on the traditional [Bacillus Calmette-Guérin (BCG)]. After six weeks of BCG, I had a test and surgery to see if it worked, and it didn't. That doctor was already started talking about taking out my bladder, and I just wasn't ready to hear that, so I decided to go and get a second opinion at a much larger hospital.

That was the best thing I ever did, because I found out there are other treatments than just BCG. I was put on gemcitabine-docetaxel, and it was six weeks of that, and then when I was tested, I was cancer free.

It worked, but bladder cancer is very recurrent, and so I stress that people [should] never miss their checkups, because years later, I had my first recurrence, and there were newer treatments. It's just interesting how newer and better things have developed. My most recent recurrence was a little over a year ago, and I was on a drug that was brand new at the time, Adstiladrin (nadofaragene firadenovec-vncg). That was even easier to take because you only have to take it once every three months. I'm cancer free since, and I've had several checkups. Even though the treatments are frightening, if it doesn't work, there's other options as well. There's always hope.

Transcript has been edited for clarity and conciseness.

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