My husband, John Quale, was diagnosed with bladder cancer in May 2000—he was 53, and I was 43. Our lives changed forever on that day. Like the majority of patients diagnosed with bladder cancer, we had never heard of the disease before, nor did we know of anyone else who had it. John’s cancer first arose in his renal pelvis, requiring removal of his right kidney. Initially, we were content to simply follow the advice of our doctors. We did not seek out additional information about the disease. We had no clue that bladder cancer has a very high recurrence rate and that our doctors fully expected it to return.
Only eight months following his surgery, doctors discovered multiple tumors in John’s bladder. An MRI showed the cancer had already metastasized to his liver and lymph nodes. We recognized then that we needed to be our own advocates, and to be armed with as much information as possible. My husband and I were both attorneys in Washington DC, and we put our analytical and research skills to work to learn everything we could about bladder cancer.
We were shocked to find out that bladder cancer is so common and frustrated by the difficulty in finding information about the disease. We were dismayed and frightened to learn about the limited treatment options available. We discovered that although there had been advances in surgery, there had been no new drugs or medical treatments for decades.
How could this be? We were aware of advances in all other major cancers—why not bladder cancer? Researching funding levels, we discovered that bladder cancer had been largely ignored and was at the bottom of the funding ladder at the National Cancer Institute. Limited funding means limited opportunities for research advances.
I learned that the five-year survival rate for metastatic disease was 5%. At that time there were no second-line approved therapies for metastatic disease. I didn’t share these statistics with John. I never considered him a statistic. I believed he would be the one to beat the odds.
And beat the odds he did: after 6 months of systemic chemotherapy, there was “no evidence of disease” in John’s liver, lymph nodes or bladder—his oncologist described it as a “unique response” and we celebrated. We understood the importance of “the now,” recognizing that our world could change again at any moment.
We continued on our bladder cancer journey for the next four years, with the ups and downs experienced by many others, as recurrent tumors in John’s bladder required multiple resections, intravesical treatments, and combined chemotherapy and radiation treatments. We became increasingly frustrated at the lack of attention given to bladder cancer when we saw news stories about all other major cancers. We were surprised to discover that there wasn’t a single advocacy organization focused on bladder cancer—in contrast to all of the other common cancers—many of which had several organizations devoted to “the cause.” We referred to bladder cancer as the “elephant in the room,” the disease no one wanted to talk about in public.
But we understood that when survivors of other types of cancer banded together and demanded better treatments, they got results. So in the spring of 2005, John and I decided to try to change the national conversation about bladder cancer, and with the help of friends and family, along with strong support from the medical community, BCAN was born.
BCAN’s mission represents our vision of the areas in greatest need of attention. First, raising awareness about bladder cancer— because the first time an individual hears about this very common disease should not be at initial diagnosis. Second, we were committed to advancing research so that patients and families would have better treatment options and more lives would be saved. Lastly, but equally important, we wanted to make sure that patients and families had access to information so that they could take an active role in treatment decision-making, and that no one diagnosed with bladder cancer would ever feel alone .
John’s recurrent bladder tumors finally required removal of his bladder in September 2006. The surgery went without surprise, but the adjustment to our “newest of the new normal” took some time. In the summer of 2007, John experienced increasing pain in his lower back. It took many months to diagnosis the cause, and by the time it was discovered, John had metastases all over. He responded to another round of chemotherapy for several months. But then his cancer came back as a monster, with no chance of beating it back again. There were no clinical trials for him to join, no second or third line therapies to try. My husband died on June 29, 2008 at home, surrounded by family and close friends. John was a remarkable man, who lived his life to the fullest, never letting his disease define him.
John would be so proud to see how BCAN has grown and the active community we created. Bladder cancer is now “on the map,” and for the first time in 30 years, we have new immunotherapy treatments approved and additional promising new treatments on the horizon. BCAN’s research program is supporting physicians and scientists all across the country, attracting the “best and the brightest” to focus on improving outcomes for bladder cancer patients. BCAN’s resources and services are providing much needed support for patients all across the bladder cancer spectrum.
The work of BCAN has been a very personal mission for me, my family, and our friends. John’s strength, courage and love are an essential part of everything we do. It’s this love that inspires me and motivates me to continue to work hard to make a difference in the lives of all who are impacted by bladder cancer.