Nearly ½ million people around the world are diagnosed with bladder cancer each year, and the numbers of people living with the most common type — urothelial cancer — are on the rise. Yet it remains one of the least understood and least discussed cancers.

Dr. Scott Tagawa, Medical Director of the Genitourinary Oncology Research Program at Weill Cornell Medicine, and Stephanie Chisolm, Director of Education and Advocacy at the Bladder Cancer Advocacy Network (BCAN), have dedicated their careers to helping people living with bladder cancer. They recently talked to us about why awareness and proper diagnosis are key to treatment and why they’re hopeful for the future.

What makes bladder cancer so tricky to diagnose?
Scott: The most common symptom of a tumor in the bladder is finding blood in your urine. But for women, blood in the urine is also a common symptom of a urinary tract infection. For men, the most common cause of blood in the urine is an enlarged prostate. It’s common for a person to have symptoms and be given a course of antibiotics without any other type of assessment being done. That’s how the cancer can be overlooked.

Stephanie: Other signs are things like urgency and frequency of urination, which happen as you get older anyway, so people often don’t think to question these symptoms. One of the biggest problems is people don’t know these can be signs and symptoms of cancer and don’t know which type of doctor to go to. If a person has a urinary tract infection that doesn’t go away, it’s time to move beyond their primary care physician or gynecologist and see a urologist to check for bladder cancer.

What are some of the causes of bladder cancer and who is most at risk?
Scott: Firsthand or secondhand exposure to tobacco smoke, toxins and radiation exposure increase the likelihood of bladder cancer. More males than females traditionally get bladder cancer due to males having a longer history of smoking. Toxins sit in the bladder so it’s helpful to drink plenty of water to flush these out and to avoid smoking as well as exposure to second-hand smoke.

Stephanie: Anything that goes into your body — whether you're a smoker or have arsenic in your water — gets filtered and stored in your bladder until it leaves your body. And so certain environmental or occupational exposures can make a person’s bladder susceptible to cancer. Bladder cancer often impacts military service members, possibly due to burn pits and other occupational exposures such as Agent Orange used during the Vietnam War. We also know that first responders, such as firefighters and EMTs, are at increased risk because of the carcinogens they are exposed to on the job. 

What are some of the biggest misperceptions about this type of cancer?
Stephanie: We often hear people say, ‘I had no idea you can get cancer in your bladder until my doctor told me that's what I have.’ That's always a big surprise. Another common misperception is thinking you can’t live without a bladder, but if the bladder cancer is life threatening, doctors can help you live without one by creating a urinary diversion.

Scott: On the other hand, many people believe you’ll lose your bladder if you have bladder cancer. That’s not necessarily true, especially for cancers that invade only the first layer of the bladder. Those tumors have a significantly lower chance of spreading and a much higher chance of being successfully treated by removing only the tumor and sometimes putting medicine into the bladder to treat it and keep the tumor from returning.

What makes you most hopeful in terms of support and treatment for people living with bladder cancer?
Scott: On the treatment side we’re looking at new therapies, including some that when used earlier could potentially move the cases from life-prolonging to life-sustaining and increase the cure rate. It’s one of the few cancers that can spread to stage 4 and still be cured with chemotherapy. There have been advances with modern immunotherapy that have benefited people whose cancer would have been incurable cancer five years ago. And there are now several other FDA-approved drugs in the United States that can help shrink tumors and help extend life.

Stephanie: A bladder cancer diagnosis can be a very isolating experience – because it involves urination, some people don’t like to talk about it – and outside support can be very helpful. I’m proud that our organization has hosted numerous informational events, such as our annual Bladder Cancer Summit for Patients and Families, and developed a wonderful group of volunteers to provide support to people living with this cancer. BCAN’s Survivor 2 Survivor program is a telephone call support program where people are matched with survivors with similar experiences who provide insight into the treatment process while lending a sympathetic ear. In addition, our major fundraiser, Walk to End Bladder Cancer, continues to expand. The pandemic has forced a virtual event option and the Walk is now in 11 different countries and 47 states, which shows how motivated people are to raise awareness of this disease.